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BS: No where else to go...
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Subject: No where else to go... From: annamill Date: 11 Mar 02 - 03:38 PM Normally I wouldn't bring my own personal problems to this place that always, well mostly, brings me happiness. Maybe in days gone by, but not so much now. Sometime I feel a stranger here... but I need help and there is really no one else to turn to. About a month ago, my daughter called and told me she couldn't stand up and kept falling over. She laughed about it. Everyone, including me and her doctor, thought it was vertigo, and that is what she was treated for. A week later, she couldn't control the actions of her left arm. This frightened us and her doctor sent her for an MRI immediately. They found 8 or more lesions on her brain. It was either MS or brain cancer and they were going to do a biopsy of her brain. She was sent to another neurologist for a second opinion and he took her to a different hospital. He told her there was no need for a brain biopsy just yet and he did a spinal tap. He filled her with steriods and sent her home until they had the results from the spinal tap. That's when her left leg became hard to control. Otherwise, she was feeling much better. Her speech, which had also deteriorated, was much better. She was able to stand and walk much better (though she walked with an odd gate) and her doctor told her she seemed 80% better. He told her that it was possible that this was a one time thing and that she may never have another "episode" again. Saturday, she called me and she was frightened. She was having trouble with her eyes. At times her site was blurry and at other time she just saw blotches of stuff. She said to me "Mom, I don't want to be sick the rest of my life". She's 32 and has three children. The doctor told her there was no evidence of MS in the spinal tap and he wasn't sure what was wrong. He's sending her for anther MRI on Thursday to see if there are more lesions. He told here that she was too nice a person and he didn't want her to have MS. Gee... My fear is this guy doesn't know what the hell he is doing!! I told her to call her primary and tell him she wasn't happy with this doctor. She is afraid he will send her back to the first doctor who wanted to give her a biopsy in the first place. I'm wondering if this may have been the better course. She told me that we'll wait until we get the results of the MRI before we make the next move. So, here I am...Scared, angry, helpless. I don't know what is the best action for her and worse, I have no say in it anyway. I raised my children to be very independant and they are. This may be the worse thing that has ever happened to me. I'm sorry to bother you, but I just don't know.. Love, Annamill |
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Subject: RE: BS: No where else to go... From: annamill Date: 11 Mar 02 - 03:43 PM "This may be the worse thing that has ever happened to me." How selfish!! This is the worse thing that has ever happened to HER!! L.A.
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Subject: RE: BS: No where else to go... From: Clinton Hammond Date: 11 Mar 02 - 03:45 PM Dang... that sucks... I'm afraid I have very little to offer except commiserations... Best of luck eh! |
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Subject: RE: BS: No where else to go... From: vectis Date: 11 Mar 02 - 03:47 PM Go to doctor with her and make a huge fuss if you are worried. You both need either facts or fact based reassurance, not soothing noises. |
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Subject: RE: BS: No where else to go... From: Desdemona Date: 11 Mar 02 - 03:49 PM Oh, God, I'm a mother of 3 and I know what you meant when you said "This may be the worse thing that has ever happened to me"; she's your child, and even though she's an adult now there's no real separation between you as far as the emotional bond goes...you're not being selfish, just honest. I can't begin to imagine what you must be going through, but my heart & prayers are going out to you & your family; please let us know what happens & feel free to PM me if you like. Keeping good thoughts, D. |
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Subject: RE: BS: No where else to go... From: MMario Date: 11 Mar 02 - 03:52 PM It can be both, Anna; the worst for you and for her. I suspect that for many parents it is worse to have something like this happen to a child - whether or not that child is adult, then if it were happening to them. At least you can admit you are scared, angry and that you feel helpless - many people would never get to that point. my thoughts are with you and your daughter - for what my thoughts are worth
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Subject: RE: BS: No where else to go... From: Rick Fielding Date: 11 Mar 02 - 03:57 PM Bloody hell Anna that's such a downer. I guess the only thing I can contribute is to echo Vectis' suggestion. Make a HUGE fuss until you get a proper diagnosis and appropriate treatment. I really hope his turns out better than it started. Rick |
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Subject: RE: BS: No where else to go... From: Amos Date: 11 Mar 02 - 04:04 PM Anna, how far away is she located? It sounds like having someone able-bodied close to her would be of great value to her, not because she is not "independent" but because she is in a time of needing help. Fierce independence can only go so far, ya know. I concur that you have to add to the pressure on the pros to do their job right with the best data they can find. Most important, be ready to communicate at any time, no matter what. We are with you all the way, Anna. A. |
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Subject: RE: BS: No where else to go... From: Bobert Date: 11 Mar 02 - 04:05 PM Forget the hair splitting as to who is the most affected, and find the best neurologist within driving range. Ask the primary physican for a referral and get your daughter there. ASAP. Mean while, a first name would be helpful so I can add her to my prayer list. |
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Subject: RE: BS: No where else to go... From: Maryrrf Date: 11 Mar 02 - 04:13 PM I am quite sure that most parents would rather be sick or injured themselves than have something happen to their child - so I understand you comments completely. I hope it turns out to be something that can be successfully treated and cured. Best wishes to you and your daughter. |
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Subject: RE: BS: No where else to go... From: Jack The Lad Date: 11 Mar 02 - 04:17 PM Best wishes, thoughts and prayers for a speedy recovery to your daughter. Jack The Lad |
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Subject: RE: BS: No where else to go... From: wysiwyg Date: 11 Mar 02 - 04:18 PM Anna, just go with your heart, and know we are here to back you up wherever that may lead. I have sent you a referral to some closer support via PM. The good part about realizing this is happening to her, not to you, is that you get to remind yourself to take care of YOU. What do you, as her support person, need in order to be in the best shape possible to be leaned upon? And what practical help can some of your MudBuds offer in that regard? love, ~Susan |
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Subject: RE: BS: No where else to go... From: annamill Date: 11 Mar 02 - 04:18 PM That's another fear I think we are both harboring, Amos. She has the love, right now anyway, of a kind strong man who is shortly to be her second husband. It hasn't been mentioned between us, but I think we're both afraid he'll decide that he can't do this for the rest of his life. This fear is two sided for me. Will he leave her/will he stay out of pity?? She is about an hour away from me and I can be with her if she calls for me. I've asked her, but I think right now she wants him, but she wants to know I'm here. The reason I bothered all of you was I was hoping someone could suggest an alternative. Is there a hospital or doctor somewhere not to far away who is REALLY an expert in this sort of problem that you could tell be about?? We live in central New Jersey. Has anyone ever heard of place near here that focuses on these types of problems? To those of you who offer your feelings and compassion, thank you so much. Love, Ann |
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Subject: RE: BS: No where else to go... From: wysiwyg Date: 11 Mar 02 - 04:20 PM ... and I PMed someone who knows the local docs for MS, to contact you ASAP. ~Susan |
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Subject: RE: BS: No where else to go... From: jeffp Date: 11 Mar 02 - 04:22 PM Ann, check your PMs. |
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Subject: RE: BS: No where else to go... From: SharonA Date: 11 Mar 02 - 04:24 PM Yikes, Annamill! How scary!!! Yes, definitely, be aggressive along with your daughter in pursuit of the correct diagnosis. The phrase "he filled her with steroids" concerns me because of the inference that he's got a cavalier attitude toward using them, which could be quite dangerous. Take a page from kendall's book, and find the best doctor there is (or at least the best that's available to your daughter). These symptoms could indicate one of any number of problems, and of course the earlier it's treated the better. If you can't be with your daughter as she does battle with the medical profession (and believe you me, I speak from experience when I say she will do battle), find someone who can be there to fight beside her so she doesn't drain her energy trying to go it alone. She'll need the support of as many people as possible who can be present with her at the doctors' offices to make sure they have a plan of action, not procrastination. Just my 2¢ worth. Good luck to you and to her; now go get 'em!!! Sharon |
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Subject: RE: BS: No where else to go... From: Ebbie Date: 11 Mar 02 - 04:25 PM Oh, God, Anna. I know what you mean about independent 'children'- I raised my daughter the same way, and boy, did it take! BUT I agree with the advice above. Go with her, take notes, tell her you would do the same for and with anyone you love (that always works for me; my daughter is fond of telling me that she is a grown woman... I suspect your independent daughter is also a logical thinker- it seems to go with the territory- so taking notes for future reference will make sense to her), be firm in your dealings with the doctors; if this one doesn't have a clue, ask them to recommend someone who does see this kind of case, and go on up the chain. When I had lupus years ago (a mild case, it turned out) I went to my family doctor for a year with no diagnosis before I gave up and went to a specialist, who on the very first visit told me what he thought it was, and the very next week told me the tests had confirmed it. This was after a solid YEAR with my GP. Made a believer out of me. There ARE people out there who see and treat whatever problem your daughter may have. Good luck, and quickly. My prayers and the best of thoughts join those of others. Ebbie |
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Subject: RE: BS: No where else to go... From: McGrath of Harlow Date: 11 Mar 02 - 04:27 PM "a one time thing and that she may never have another "episode" again." That sounds to me like he's thinking in terms of some kind of fit. Hew sounds like a nice guiy, but nokt too sure what's going on, and casting around for what to do and say.That doesn't mean he may not be quite right.
It might be a good idea to get on to some kind of helpline or advice service run by people with MS and their families. That way you could be talking to people who have been in this kind of situation, worrying about whether it's MS or what.
I see from the Mudcat resources that you are in the USA, so I wouldn't know where to start looking for that kind of thing, but I'm sure it exists. The professionals are important, but they aren't the only experts. |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 11 Mar 02 - 04:31 PM I was diagnosed with MS at age 30. The most frightening time was the early stages, when I hadn't been diagnosed yet. The first step is get a diagnoses.Once you know what you're fighting,you can learn how to fight it. I once had a doctor with a "Wait and see" attitude. He didn't last long. Much to say but not appropriate here. PM me. Ron. |
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Subject: RE: BS: No where else to go... From: SharonA Date: 11 Mar 02 - 04:32 PM P.S. – Central New Jersey? Heck, you've got many fine university hospitals in New York and in Pennsylvania no farther than an hour or two away!! I've had a very positive experience with Thomas Jefferson Hospital in Philly, in both their rheumatology and pulmonary departments, but I don't know about their neurology department. |
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Subject: RE: BS: No where else to go... From: harpgirl Date: 11 Mar 02 - 04:33 PM So sorry to hear this Anna. The symptoms reminded me of two of my therapy patients, both of whom had Gullian-Barre. In the younger one, it came after an abortion, in the older one, it was associated with prolonged exposure to chemicals. It causes creeping paralysis and needs to be accurately diagnosed and treated quickly. My younger patient had to be wheeled out of my office on an office wheeled chair because she came to me for help in convincing her parents, who were Christian Scientist that she needed to see a Dr. The older one had full paralysis including eye problems and was in bed until he got better. It happened to him twice. I don't know the causes, I just know what it is associated with. Look it up on the web, quick. Abby |
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Subject: RE: BS: No where else to go... From: McGrath of Harlow Date: 11 Mar 02 - 04:33 PM "a one time thing and that she may never have another "episode" again." That sounds to me like he's thinking in terms of some kind of fit. He sounds like a nice guy, but not too sure what's going on, and casting around for what to do and say. That doesn't mean he may not be quite right.
It might be a good idea to get on to some kind of helpline or advice service run by people with MS and their families. That way you could be talking to people who have been in this kind of situation, worrying about whether it's MS or what.
I see from the Mudcat resources that you are in the USA, so I wouldn't know where to start looking for that kind of thing, but I'm sure it exists. The professionals are important, but they aren't the only experts. |
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Subject: RE: BS: No where else to go... From: harpgirl Date: 11 Mar 02 - 04:36 PM ...and of course the symptoms sound so much like MS that that must be ruled out but auto immune disorder diagnostics and treatment seems in order... |
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Subject: RE: BS: No where else to go... From: annamill Date: 11 Mar 02 - 04:39 PM I'm at work now and I have to leave. I'll be back about 7:30 am tomorrow (my time, EST) and I am looking forward to hearing from all of you. There have been many good suggestions already. Some have PMed me with phone numbers I am going to try tomorrow. I have no computer at home right now. Thank you all again. Love, Ann |
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Subject: RE: BS: No where else to go... From: katlaughing Date: 11 Mar 02 - 04:40 PM Oh, Anna, lots of love and {{{{{ANNA}}}} hugs coming from here. Here is one place I found which looks well worth looking into: New Jersey Neuroscience Institute at JFK Medical Center. I agree with the others and cannot stress enough how important that she has someone with her when she is going through this with the docs. It is difficult, when one is the patient, to think clearly, not be intimidated and scared. They need someone there to take notes, ask questions, and to give feedback to the patient, after the doc's visit, when they frequently space out whatever was said except maybe dire predictions or pronouncements. A lot of doctors get so used to telling people there is something wrong with them, they forget that it is a new and usually total shock to the person, let alone have a clue of what it does to a person's psyche. I think all patients should have an "ombudsman/advocate" with them in these types of situations. I hope your daughter will let you be one for her. As for the soon-to-be husband? If he can't hack it, he's not worth it. My Rog and I moved in together in June 1979. Within a month, we found out I had to have major surgery and that I had a leaky heart valve. There was never any fear or thought that he might not be there for the long haul and today we celebrate our 22nd anniversary. Fear is so destructive. When it comes up, please try to say to it "Thanks, but no thanks. We can make without you! Love and Light, darlin' and holler if there is anything else I can do, luvyakat |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 11 Mar 02 - 04:43 PM Annamill, Gonna send you a P.M.----maybe we can talk. Onward, Art Thieme |
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Subject: RE: BS: No where else to go... From: Pip Freeman Date: 11 Mar 02 - 04:45 PM Anna, I do feel for you and your worries about your daughter and cries for help. There seems to have been very sound advice on nearby hospitals, I should get her there as soon as you can, and get a correct diagnosis and positive treatment. It does help to share troubles, please know that you are in my thoughts and prayers. |
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Subject: RE: BS: No where else to go... From: annamill Date: 11 Mar 02 - 04:48 PM Amy, her name is Amy. |
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Subject: RE: BS: No where else to go... From: Amos Date: 11 Mar 02 - 04:52 PM Well, tell Amy that a big bunch of kindhearted strangers are cheering her on. A |
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Subject: RE: BS: No where else to go... From: Lonesome EJ Date: 11 Mar 02 - 04:52 PM annamill, I can't say much except that I hope you both soon find healing. |
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Subject: RE: BS: No where else to go... From: wysiwyg Date: 11 Mar 02 - 05:42 PM She will be getting a phone call from someone nearby with MS who knows the disease and the docs. Prolly has a message already waiting at home. Prayer chain is on it, Anna. ~S~ |
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Subject: RE: BS: No where else to go... From: Jeri Date: 11 Mar 02 - 05:55 PM I don't even want to try to guess the diagnosis when two doctors can't do it even with test results in hand. The doctors look for the most common things that fit the symptoms and rule those out first. Anna, ask the doctor lots of questions. Write them down before you talk to him. Some examples "What DID the spinal tap show? What is your plan if the MRI shows more lesions? What's your plan if it doesn't? What will a brain biopsy show? How is a brain biopsy done?" She may very well end up having to have one, but it may not be as scary as it sounds. I'm with you, friend. I believe I met Amy at one of your gatherings, but she wouldn't remember me. Love, Jeri |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 11 Mar 02 - 05:56 PM Anna, I see you've heard from Dharmabum, Art, and now me. We all have MS and have been through the horrible process of diagnosis. We understand. I told my Hubby after one of my episodes that it was easier to be me than him, because I knew I'd be OK, he just worried about me. That's probably what you're going through right now. Speaking for myself, I had ten years to read medical journals and see different doctors. I have tons of information and advice...most I would not put on the Internet for everyone to see. Not because it's not true, but I've learned that everyone is so vastly different that it's better to not talk about some things publicly. You will be inundated with advice, all well meaning, but much of it just plain wrong or irrelevent. I'll PM you several things, but to you and anyone else listening, please contact me about specifics if you need to.
And for everyone in this situation, my advice: I'll watch this thread. If it is MS, there are some things you need to know early on. |
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Subject: RE: BS: No where else to go... From: Morticia Date: 11 Mar 02 - 06:00 PM Don't have any advice beyond what the good folks here have said, but you and Amy are in my thoughts. |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 11 Mar 02 - 06:13 PM Oh yes, I forgot...the treatment for an acute MS attack is massive intravenous steroids, and time is important. I don't mean to alarm you, but get to the right doctor quickly. (It took me 3 weeks for just an appointment.) |
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Subject: RE: BS: No where else to go... From: Bobert Date: 11 Mar 02 - 06:32 PM I called my cousin in New Jersey who seems to know everything there is to know about any subject and he said to start out at Johns Hopkins in Baltimore, which is within driving range of where you are. Heck, I have alot of respect for the folks at Johns Hopkins so, if nothing else, shouild you desire a second opion, keep it in mind. Meanwhile, Amy will be in my prayers. |
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Subject: RE: BS: No where else to go... From: kendall Date: 11 Mar 02 - 06:46 PM I'm sold on Johns Hopkins. Get her there as soon as you can. |
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Subject: RE: BS: No where else to go... From: Liz the Squeak Date: 11 Mar 02 - 07:00 PM No where else to go? Where else would you come except to people who love you? Make sure you take care of yourself too. Don't be up fretting all the night when she doesn't call, because you're worried she should be..... Sometimes living with a long term patient is worse than being the patient, because everyone wants to help the patient. Been there, done that, got over it, got on with it. Kind thoughts, always LTS |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 11 Mar 02 - 07:09 PM There is good advice here from good folks. SOLU MEDROL is the steroid I had at Mayo for a major attack. It got me on my feet again---and even walking. The next time I got it (a year or so later) there was no change. Johns Hopkins, Mayo---whatever. Do get to a thorough place. And above all, try to be patient while the many tests are evaluated.---------As I've said, being diagnosed, finally, was a huge weight off my shoulders. Art |
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Subject: RE: BS: No where else to go... From: Jeri Date: 11 Mar 02 - 07:20 PM As far as finding a good facility where the doctors will take Amy's symptoms seriously and have a lot of experience - yeah. It's a lot easier being lost in "limboland" if you're confident the doctors have a good map. |
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Subject: RE: BS: No where else to go... From: Clifton53 Date: 11 Mar 02 - 07:25 PM I'm so sorry to hear this my friend, if there's anything I can do let me know. Clifton |
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Subject: RE: BS: No where else to go... From: Giac Date: 11 Mar 02 - 07:35 PM Hugs, energy and positive thoughts for Amy, and for you. Mary |
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Subject: RE: BS: No where else to go... From: Dave the Gnome Date: 11 Mar 02 - 07:48 PM As a Dad of 5 I know what you must be going through - My lot have had their problems. My thoughts are with you and, if you need a shoulder to lean on, my support as well. She will get better - she has to with this crowd rooting for her!!! Cheers Dave the Gnome |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 11 Mar 02 - 07:51 PM Just thought of several more things that you and Amy need to know now: 1) DO NOT TELL her boss...yet. The first instinct is to immediately spill your guts. Don't tell anyone until you've studied the pros and cons of what is best for you. 2) DO NOT VOLUNTEER the information to an insurance person that you even saw a neurologist. They can "diagnose" you even before a doctor does. Many doctors puposely don't put things on your record that may hurt your insurability. 3) Some referral clinics may not be covered by insurance. 4) The National MS Society webpage is here [http://www.nmss.org/] I've found it to be exceptional. Local chapters are everywhere, and they are EXTREMELY helpful with ANYTHING you need. |
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Subject: RE: BS: No where else to go... From: GUEST,andi Date: 11 Mar 02 - 07:57 PM Anna, My thoughts and prayers are with you and Amy. That said I have dealt with doctors for years, both for myself and for my dad. The most important thing is that Amy feel comfortable with her Doc and that includes feeling comfortable that he is doing all he can for her. After that having someone who goes with you consostantly and is willing to ask the hard questions is important. take a note book and outline your questions before meeting with the doc and make sure he addresses all of your concerns each visit. If he can't make sure he tells you why and that the reason is viable ( waiting for test results,ect). Make sure he realizes that he is a partner in your daughter's care but that your daughter is in controll and if she is not able, some *she* designates. if the Doc can't get it, then get a new one! Make sure you are clear on her wishes and that they are honoured at all times that is the biggest gift you can give her. I will keep ypu all in my prayers andi |
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Subject: RE: BS: No where else to go... From: RichM Date: 11 Mar 02 - 08:02 PM Two years ago, my wife came home one evening after seeing friends. When she got inside the door, she suddenly collapsed to the floor. I heard her mewling, that's the best word to describe it, from where I was upstairs. When I came down, she was incoherent--she was alert but her words were not connected to what she was trying to say--and she knew that! I rushed her to emergency, she recovered after a couple of hours;long story short: after a year of testing for heart, brain, etc problems, the best opinion was that she was suffering from a form of migraine attack, possibly brought on by caffeine intake...she had a further but lesser attack 4 weeks after the first one, and nothing since. What I'm trying to say, I guess, is that this may or may not be temporary....in any case, my prayers and good wishes go with you and your daughter. Rich McCarthy |
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Subject: RE: BS: No where else to go... From: Charcloth Date: 11 Mar 02 - 10:17 PM prayers are with you & all your family Charcloth |
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Subject: RE: BS: No where else to go... From: catspaw49 Date: 11 Mar 02 - 11:02 PM Hi old friend........You're getting all the right advice I can imagine in this thread and we are lucky to have some folks here who have gone through this before. I have no additional advice but can only support what Mary and others have lined out. See the right people now and to hell with the rest. If the boyfriend can't take it, then like kat said, tain't no loss. Both you and Amy will be at the forefront of my thoughts along with a few other 'Catters going through some tough times as well. Remember too that you be the "Spud Woman" so offer the Doc an improved image on the beach and I bet you he takes you in right away!!! LOL....and in this case it means what you used to think it did, Love-On-Line because we all send you all we have. Bless you Darlin'.....This will work out and that's from one who as you know, knows the real power of this community. Much Love, Spaw |
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Subject: RE: BS: No where else to go... From: Deda Date: 11 Mar 02 - 11:04 PM My prayers too -- for you and Amy. I too have a grown daughter but she's much farther away, living in Israel, which is scary enough. But I hope you find a healer. When you're facing something that feels this threatening, you need an ally, you need support, you need someone who knows the job and knows that relating to Amy is the first step in helping her. Don't settle for less than that. I'm here rarely these days but I just wanted to add my virtual support, along with prayers -- sorry it isn't more. |
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Subject: RE: BS: No where else to go... From: alison Date: 12 Mar 02 - 02:05 AM prayers and thoughts from me too.... and big hugs love alison |
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Subject: RE: BS: No where else to go... From: annamill Date: 12 Mar 02 - 08:26 AM Thank you all so much. Thank you to all who have PMed me. It's too early to call Amy right now, but as soon as I know shes up and about I'm going to tell her to login to Mudcat and read all that you wonderful people have told me. I hope it spurs her to some action and she doesn't wait for this doctor. I'd forgotten how wonderful this place can be and how much love is generated here. This is what kept me here all this time. Thank you all so much and I will be answering all the PMs as soon as I can. Love, Ann |
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Subject: RE: BS: No where else to go... From: annamill Date: 12 Mar 02 - 09:46 AM Amy tried to read this thread this morning, but she couldn't because it caused too much pain and was giving her a headache. BUT..she did call the MS Society and they are faxing her a list of recommended doctors. YEA!! I hope something results from this phone call. Thank you again. Love, Ann |
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Subject: RE: BS: No where else to go... From: annamill Date: 12 Mar 02 - 11:29 AM Hello! I've been talking with Amy and she's afraid she will have to have a brain biopsy which entails sticking a needle through her skull into the brain. My Question: Has anyone else had to do this? Is this the normal course in diagnosing MS? Love, Ann |
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Subject: RE: BS: No where else to go... From: catspaw49 Date: 12 Mar 02 - 11:46 AM Anna, hopefully someone can answer that, but let me say this and Amy needs to understand it which may take some doing on your part. When she finds a qualified doctor she will undoubtedly undergo some testing of some sort and I can tell you from experience that a lot of testing is scary, frightening, and can be pretty damn painful. Some is a walk in the park. The important thing is to diagnose the problem, whatever it is. I can think of any number of tests I've had in the past few years that I would not want to go through again, but as a result of doing them, we learned information that made things better. Unneeded tests are undoubtedly done sometimes, but if you have found a good doc, that won't be the case. No matter what it is, tell Amy that the result of NOT doing the testing can be far worse than anything else. Luvya Kid! Spaw |
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Subject: RE: BS: No where else to go... From: SharonA Date: 12 Mar 02 - 11:49 AM Hoo-hah!! That's great news: the first step of the journey has been taken. Thanks to Mary in Kentucky for her comment that "the treatment for an acute MS attack is massive intravenous steroids"; it relieved me to read that after posting my concern about the doctor "filling" Amy with steroids. Now I wonder if he gave her enough, and in the correct manner (orally or intravenously?). There's no way to know that without consulting the experts, of course, so let's hope Amy can see one or more of the doctors from that fax pronto! As for her kind, strong fiancee, this will certainly be a test of his kindness and strength, but it will be better for him to find out now whether he has what it takes to keep that "in sickness and in health" promise before he makes it. Then Amy will never have to wonder whether he's staying in his marriage to her because he feels "stuck" with keeping that promise. Good thoughts and good wishes going out from here to your daughter and to you, Ann. Sharon |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 12 Mar 02 - 11:51 AM Ann, I've never had this done, but it doesn't sound too unusual to me. After rereading the above posts, with my limited medical knowledge, I feel both doctors are on the right track. You can read forever about diagnosing MS, but the bottom line is you have to go with a neurologist who is familiar with the local machines, labs, personnel in the area. Typically, these days, MRI lesions and patient history can diagnose it. If there is a question with these, there are other tests (oligoclonal bands in the spinal fluid, various evoked potentials, etc.). There is just too much variability with all these to even venture a guess...that's why you choose the best doctor you can find and trust him/her. The MS Society is a wonderful resource to maintain contact with. Whatever the tests to come, Amy needs your support now. I'll be in touch. |
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Subject: RE: BS: No where else to go... From: SharonA Date: 12 Mar 02 - 12:01 PM Re the brain biopsy: I suggest sending PM's or e-mails (or making phone calls) to the 'Catters with MS who have posted here, to find out if that's standard operating procedure for diagnosis. I'm just guessing in the dark here but might it be necessary only if other tests are inconclusive?? Where did Amy get the info about needing a brain biopsy in the first place??? As catspaw said, not getting a necessary test is worse than getting one. For my own part, I wouldn't want to live through a lung biopsy again but it did tell the doctors that I did not have lung cancer!! Besides, the idea of having someone else stick a needle into one's brain may be worse than the test itself. Bottom line: get the facts before wondering (and needlessly worrying) about possibilities! |
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Subject: RE: BS: No where else to go... From: Kim C Date: 12 Mar 02 - 12:11 PM Anna, y'all do what you have to do. Raise hell if necessary. Prayers are with you. Kim C |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 12 Mar 02 - 12:59 PM Did I mention SOLU MEDROL? That is the particular steroid that got me from being pretty much immobile to where, with therapy, I could get on my feet. But it had it's limits. Art |
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Subject: RE: BS: No where else to go... From: GUEST Date: 12 Mar 02 - 01:57 PM |
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Subject: RE: BS: No where else to go... From: GUEST Date: 12 Mar 02 - 02:02 PM Ann,
Sorry. That last blank post was me. I know three different people who went through hell trying to get an accurate diagnosis of their ailment. One of them turned out to have MS. All three were successfully diagnosed by doctors at Johns Hopkins. It's a bit of a jaunt, but not impossibly far away from central New Jersey. |
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Subject: RE: BS: No where else to go... From: Mudlark Date: 12 Mar 02 - 04:12 PM Ann...Just wanted to add my best wishes for a speedy resolution. It sounds like Amy is very frightened right now, as well she would be. All the more need for her to have a good support team with her when she sees docs, so important questions can be remembered and asked (and the answers remembered!). Fear is so debilitating, it helps to have strong voices with you at such times, no matter how independent, to press for information, to be willing to raise uncomfortable issues, and to let the medical machine KNOW that the patient is not alone, not to be intimidated or not fully brot into the picture. Also, Amy should be very upfront about her fears...there are lots of things that can be done, even for very unpleasant tests, to help ease pain and anxiety. This is one place where stoicism is not called for! I'm just very glad you brought this huge worry to Mudcat...thank you for telling us what is going on with you.
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Subject: RE: BS: No where else to go... From: Susan from California Date: 12 Mar 02 - 10:25 PM Thoughts and prayers from California! Sue |
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Subject: RE: BS: No where else to go... From: Tinker Date: 12 Mar 02 - 10:57 PM Thoughts and prayers.....strength and courage.... Tinker |
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Subject: RE: BS: No where else to go... From: CarolC Date: 12 Mar 02 - 11:20 PM Even though I've spent the last 30 plus years of of my life living with a debilitating chronic illness and dealing with just about every kind of medical professional imaginable, I find that I don't have any advice for you except this...
Never give up on your daughter. She's so fortunate to have such a caring and concerned mother. That fact will help her almost as much as any help she gets from the medical community. My illness mimics MS in many respects and several medical professionals have thought it might be MS. But I have never recieved a diagnosis of MS, so I don't have any advice for you on how to deal with it, or even how to get a diagnosis. I see that there are several others here who have a lot to offer you in that respect, however. Good luck to you and to your daughter. Here's hoping for the best possible outcome for her. |
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Subject: RE: BS: No where else to go... From: Rick Fielding Date: 12 Mar 02 - 11:25 PM Boy Anna, do I echo Carol's statement about her being lucky to have such a caring and concerned mother. That is SO true...and NEVER automatic. Hang tough. Rick |
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Subject: RE: BS: No where else to go... From: Big Mick Date: 12 Mar 02 - 11:53 PM There is so much that I love about The Mudcat, but there is one thing I hate. I have so many friends now, that live in distant places and it leaves me feeling helpless at times like this. Annamill, you must know that my heart is aching for you. But knowing you, I know that you are equal to the task at hand. You were given a great gift in your daughter, and she was blessed to get you for a Mom. Please know that this post to you contains much love and the biggest Big Mick hug that I have. In fact, two of them, one for you and for your daughter. Mick |
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Subject: RE: BS: No where else to go... From: Hollowfox Date: 13 Mar 02 - 07:02 AM I wish I could offer more than prayers, good thoughts and a candle, but you've got those, for sure. |
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Subject: RE: BS: No where else to go... From: catspaw49 Date: 13 Mar 02 - 08:01 AM Mick said: "There is so much that I love about The Mudcat, but there is one thing I hate. I have so many friends now, that live in distant places and it leaves me feeling helpless at times like this."..............Yep. Once in awhile even the Mick the Thong Stuffer hits the nail on the head! Now if we could just teach the big, dumb, Mick, not to hit the nail with his head, there's no telling what other gems he might crank out. Seriously, it frustrates the hell out of me many times not to be able to be there in 3D, just to spend a few hours, give out a few hugs, get some in return, and generally just do the things that can only happen in 3D. But I hope that the virtual hugs we all give and the love we share in this weird place can somehow suffice for now for you and Amy (and Kendall, and Art, and Lyrical Lady, and Mrrzy, and.......)........You've got all my best Anna and all I have to give. Spaw |
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Subject: RE: BS: No where else to go... From: InOBU Date: 13 Mar 02 - 08:25 AM Holding you, your daughter, and her children in the light, Larry and Genie. |
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Subject: RE: BS: No where else to go... From: annamill Date: 13 Mar 02 - 09:57 AM Thank you all so much. Mick, I can feel that hug from here. uuffff.... I love you all. Now, news. Amy has reached a neurologist that was recommended by the MS Society (her present doctor is NOT on the list) and he will wait until after her second MRI tomorrow to take action. If the MRI is inconclusive, he will definitely do the brain biopsy, if it shows anything he will send her Mt Sinai hospital for more tests and treatment. At last, action! Amy is worried about having her hair shaved not so much the needle. Cheez! Talk about vanity. We were on the phone late last night and I was crying and SHE was comforting ME. I raised a strong child. Again, thank you for your input and help. My writing here and your response spurred her to move and I am so grateful for you all. Art, thank you and I will be in touch soon. Love, Anna |
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Subject: RE: BS: No where else to go... From: Jeri Date: 13 Mar 02 - 10:12 AM It's always easier to deal with your own emotions than others' but it's great you can both depend on one another. Anna, you're one of the most gentle, generous, loving people I've met because of Mudcat. Have as many hugs from me as you want. |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 13 Mar 02 - 10:26 AM Anna, you and Amy are still in my thoughts and prayers. I don't want to go on and on or alarm you, but I thought of another thing that it's best to know now. When Amy goes for the MRI tomorrow, she will not be told any results, so she will just have to be patient. Also, the technicians will ask her why she is having the test done. It's best to just say the words for symptoms that her referring doctor has told her, and not say the words MS or cancer or any other disease. You don't know what insurance companies will do in the future, so it's just best to minimize the data. Also, don't antagonize your doctor by asking threatening questions. There are many battles going on that you'll never know about concerning the various machines and techniques for testing. Your doctor is probably doing more for you than you'll ever know. Let us know how it goes. {{{{{{{{HUGS}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: SINSULL Date: 13 Mar 02 - 11:09 AM Anna, I just visited this thread for the first time. I am sorry that Amy is having such a tough time. Stay strong and lean when you need to. Anything at all - just ask. Mary |
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Subject: RE: BS: No where else to go... From: Micca Date: 13 Mar 02 - 01:53 PM Dear Annamill, I only just found this(due to a prompt from another Catter who Knows I had met you) you know I am here, if there is anything I can do, just ask, You and Amy are in my thoughts, and in such healing and good thoughts as I can offer, Micca |
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Subject: RE: BS: No where else to go... From: Pseudolus Date: 14 Mar 02 - 10:21 AM It's an unfortunate thing in life that bad things happen to good people. But it's when those bad things happen that folks get a chance to show what they're really all about. The support offered here is awesome!! I'm really proud to know you people, albeit electronically.... Anna and Amy, Please add my humble prayers and well wishes to the mix.
Frank |
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Subject: RE: BS: No where else to go... From: bernil Date: 14 Mar 02 - 03:30 PM Annamill! If it happens to be MS (which I have) I just want to say:
MS isn't the end of everything - it's just a new way of doing things.(not my words but stolen somewhere…) And if it isn't MS, just change those letters to whatever it is... I also think it often must be worse to be a relative than to be the person with the disease. As for me living with a cronical disease is quite OK, but to be the mother of a person with a disease that isn't even diagnosed yet – that really can't be easy! Mudcat is a great place to share such problems and get support. Here you can even get: A big hug from Sweden! Berit |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 14 Mar 02 - 03:56 PM Nice to see you again Berit! Anna, we're all still waiting to hear news from you. |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 14 Mar 02 - 06:31 PM I remember the testing being worse than the MS! Best wishes & thoughts,Amy & Mom. DB. |
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Subject: RE: BS: No where else to go... From: Amos Date: 14 Mar 02 - 06:37 PM Dear Anna, You are really greatly loved in these parts, ya know...keep your chin up and your nose pointing north. Call if you need anything at all. Amos |
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Subject: RE: BS: No where else to go... From: AllisonA(Animaterra) Date: 14 Mar 02 - 07:02 PM Anna- this is my first time checking in for awhile. My thoughts and prayers and hugs are with you and your daughter. |
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Subject: RE: BS: No where else to go... From: Bert Date: 15 Mar 02 - 10:25 PM Love and good thoughts to you and Amy. Don't play down her concerns about getting her head shaved, I remember how Lou cried when the chemo made her hair fall out. Hugs from both of us. Bert & Tree. |
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Subject: RE: BS: No where else to go... From: Steve Latimer Date: 16 Mar 02 - 01:36 AM Annamill, My prayers go out to you and Amy.
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Subject: RE: BS: No where else to go... From: GUEST Date: 16 Mar 02 - 12:44 PM we need a healing circle |
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Subject: RE: BS: No where else to go... From: Amos Date: 16 Mar 02 - 02:36 PM I'm kinda fond of trapezoids, myself -- don't they have healing qualities? Are we gonna have to start a protest movement about geometry bias now? A |
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Subject: RE: BS: No where else to go... From: Mr Red Date: 16 Mar 02 - 09:50 PM Annamill the problem with specialists is they see a problem in the context of their speciality, so if they are confused they inevitably take refuge in their their specialism or reluctantly refer the patient on. I agree, if second opinion givers are preferrable then be with her to take notes, you will be her second "opinion receiver". You will hear, and see different things, he will be busy interacting with her, you can observe him. It is reckoned that 70/80% of human communication is non verbal so read the body language. My thoughts are with you but you need something to do to concentrate your mind on the solution as opposed to worrying on speculations. Hope the above helps. An ex-girfriend asked me to go with her at the consultation with her oncologist about the whole body scan. Not quite in the same league as offspring but I coped very well because I told myself I was going to be no use to her worrying on her behalf, I asked a couple of questions but mostly observed. |
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Subject: RE: BS: No where else to go... From: GUEST Date: 17 Mar 02 - 12:12 AM No it looks more like a pink triangle |
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Subject: RE: BS: No where else to go... From: SINSULL Date: 17 Mar 02 - 03:59 PM Anna...any news? |
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Subject: RE: BS: No where else to go... From: annamill Date: 17 Mar 02 - 05:16 PM Hi Friends. Amy has been diagnosed with "Aggressive MS". Not good. She is to start 5 days of intravenous steroids and she will be sticking a needle in herself, once a week for the rest of her life. I have forgotten the drug, but it starts with an 'A' and seems to be the drug of choice for MS sufferers. She seems to be in good spirits and is anxious to start. Right now she cannot see very well, she cannot walk, she tires so easily. I hope this helps slow down this awful desease. I'm sorry I haven't been back to you, but I've been away from a computer and I've been very busy. Thank you all again. Love, Ann |
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Subject: RE: BS: No where else to go... From: Amos Date: 17 Mar 02 - 05:31 PM My god, my god. Anna, hugs and more hugs from far to the West. FWIW: When the intial shock of this last two weeks calms down, I would suggest you do everything you can to get your girl laughing as long and hard as possible. A |
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Subject: RE: BS: No where else to go... From: Noreen Date: 17 Mar 02 - 05:32 PM (((((Amy))))) and (((((Ann))))) Sorry, can't think of anything to say, but wishing you both well. Love, Noreen |
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Subject: RE: BS: No where else to go... From: CapriUni Date: 17 Mar 02 - 05:36 PM {{{{{ Ann & Amy }}}}} I hope the drug slows down the disease, too. Though take heart: every year, drugs are getting better, and our understanding goes further. Where there is life, there's hope. |
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Subject: RE: BS: No where else to go... From: wysiwyg Date: 17 Mar 02 - 05:39 PM Anna, I think Mary and Dharma will tell you, she will most likely have ups and downs, and MANY really GOOD days. ~Susan |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 17 Mar 02 - 05:48 PM Hi, Anna, So very sorry. The drug you are referring to is probably Avonex. It is one of the big three drugs which don't cure MS but can slow the onset of exacerbations. You have much to learn and cope with but that is probably best done through the National MS Society. The books and publications they offer are many. Slowly, you WILL get a handle on this sad new reality. Keep in mind, I'm here if you need to talk. I'm best in the morning. Later in the day, I hit a wall and the fatigue takes over. Love to you both, Art Thieme |
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Subject: RE: BS: No where else to go... From: CapriUni Date: 17 Mar 02 - 05:59 PM Ditto what Amos said: Laughter really is miraculous. And remember: MS can rob a person of a lot abilities, but it can't rob them of their personhood. That's hard to remember in this culture that places so much value on outward appearances, but it is vital. Hang in there, use every resource open to you, drug wise, and people-wise, and don't be discouraged by doctors. (*note: I read once in a magazine for the disabled that doctors routinely underestimate a person's quality of life, compared to the how the patient herself rates it. So focus more on Amy's good spirits than on the doctors' dire predictions for the future). As Roger Miller once wrote:
You can't roller-skate in a buffalo herd |
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Subject: RE: BS: No where else to go... From: Morticia Date: 17 Mar 02 - 07:25 PM I am so sorry to hear this.Dunno what our MS sufferers would say butI remember hearing good things about a gluten free diet.My best love to both of you. |
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Subject: RE: BS: No where else to go... From: katlaughing Date: 17 Mar 02 - 07:37 PM Annadarlin', thanks for taking the time to let us know. Lots of Big Western Hugs for you and Amy. Remember to lean on your friends whenever you need, we'll be here for you. Art, Dharma, Mary, Berit, any others I may have missed, thank you so much for being so upfront and helpful with this and your experiences. I am proud to be in the same community as you folks. In Peace Profound & Love, Kat |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 17 Mar 02 - 07:41 PM OK, Now we know what it is. Now to learn how to not only fight it,but also live with it. Hopefuly the steroid treatment won't be long term,but it's pretty effective at kickin' the disease's butt. I've been on Avonex since last May.Once a week,self injections.First couple of times Amy will feel flu like symptoms for about a day after.For many people the side effects are less after time. I just feel a bit irritable & run down for about 20 or so hours. MS tip,Have Amy do her Avonex injections an hour or two before bedtime. That way she can sleep through the first few hours of the side effects. I've only had one relapse since the injections (in January)it didn't hit as hard as previous relapses. There's tons of support out there,MS Society,local support groups,etc.I'm sure you've already gotten much of this info.
This is not great news Anna,but it could have been much worse. There will be some really "crappy"days. But there will be alot of good days also. If nothing else,MS has taught me how to appreciate the good days and the really important things in my life. And spend less time worrying over the BS. You've got my number,I'm about an hour and a half away.I'm here if you need something. Ron. |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 17 Mar 02 - 07:58 PM Just in case you don't already have this. www.avonex.com DB. |
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Subject: RE: BS: No where else to go... From: annamill Date: 18 Mar 02 - 08:20 AM I'm afraid I haven't been as responsive as I should be to my beautiful kind friends, but even thinking about it make me well up. Talking about it really hurts. I'll call soon. I REALLY appreciate all the helpful advice and kind thoughts. We need them. Yes, it's Avonex. She laughs at herself all the time. She's a real trooper. I know she must be scared, but you'd never know by talking to her. At the hospital they gave every test for every section of her body conceivable. They even had a dermotologist in. ??? After it was all done. She called me and said "I have great news Mom!" "I'm perfectly healthy" "It must be all in my head". DId I already tell you all this? Back to work. Thank you again. I need you. Love, Anna |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 18 Mar 02 - 08:37 AM Anna, I'm back home now and saw your post. I'm not surprised, but greatly saddened. You have my phone number and address...feel free to get in touch. I really don't mean to keep giving advice, just know that I'm passing on the things that helped me. The MS Society has a series of articles (usually sent to the newly diagnosed) called Knowledge is Power. I strongly suggest you and Amy and everyone around you read these. You will soon feel the comfort and power that comes from a better understanding of all the things going on around you. {{{{{{{{{HUGS}}}}}}}} Mary |
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Subject: RE: BS: No where else to go... From: catspaw49 Date: 18 Mar 02 - 08:45 AM Well Anna, we're all here for you to do whatever it is and ask whatever of us. You know that though don't you? Ya' know, this is quite a "Medical Society" we have around here too isn't it? Like kat said, I am honored to be part of a community that includes the likes of Art, Mary, Ron, and Berit and those who have shared their own experiences and knowledge of MS from a very personal level. We have others too with other medical situations who are also quite willing in many cases to jump in and pass on what they have learned or know from personal experience on a variety of "ailments." We have transplant patients, heart, liver, kidney, intestinal, orthopedic, cancer, mental, and other patients here too so that it's really not a bad place to get some support beyond the love and concern we all feel for our fellow humans. People with real knowledge of their own situations who many times are willing to share with us what to expect and what to do. No, we don't replace Docs or anything, but much as I may hate the fact that so many of us have some of these things, it sure is wonderful to gain some firsthand experiences which only adds to the support we get. I mean, I know this isn't a medical forum, but you have to admit we have a lot of medical knowledge (too often learned the hard way) around here and people who readily share to help in the support of what can be so frightening when it first occurs, as most medical problems are. We love you Anna, and I am personally grateful for this community, brough together by song, but bonded by friendship, love, and compassion. Spaw |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 18 Mar 02 - 09:36 AM It's me again...I just thought of something else you might want to know now. My family was not told this by the doctors or hospital...a relative who is a doctor told them this, and it helped them tremendously.
RE: The steroid treatment That's all I can think of now. Soon you and Amy will know more than anyone else around you. {{{{{{{HUGS}}}}}}}}} Mary |
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Subject: RE: BS: No where else to go... From: SINSULL Date: 18 Mar 02 - 10:57 PM Annamill, Screw "responsive". You and Glenn take care of each other, do what you have to do for your family, then come back to us when you are up to it. We will be here for you. Mary |
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Subject: RE: BS: No where else to go... From: annamill Date: 19 Mar 02 - 07:52 AM Good morning! Mary in Kentucky, I told Amy what you had written about the steroid psychosis and evidently she had been told this before by her doctor and the nurse who gave her the first bag of steroids. All she could say was "My poor Honey" referring to her fiance, who, by the way, is exhausted from working all night and then running around all day. Now he has to deal with a "Chatty Kathy" too. She had her first bag yesterday by a nurse, but now her fiance will be doing the honors as he was instructed. I sure hope he knows what he's doing. Amy was in amazing good spirits last night. ..and people say drugs aren't good for you. ;-) I know she is in for a comedown, but she will handle it, as we all will. She is looking forward to being able to see again. This is what she misses the most. Understandable. Thank you for listening. Love, Ann |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 19 Mar 02 - 08:24 AM {{{{{{{{HUGS}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 19 Mar 02 - 09:11 AM DITTO, Under the Avonex cloud myself today. Sometimes good things make you feel like crap. Hang in there Amy & Anna. Ron. |
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Subject: RE: BS: No where else to go... From: Peg Date: 19 Mar 02 - 10:29 AM Best of luck to you and your daughter. My mom was diagnosed with MS in her 20s and it was in remission for many, many years (until her 50s). She was diagnosed with adult onset juvenie dibetes at age 35; still the MS stayed in remission. But she continued smoking heavily and was never someone to take a really active role in her healing; just let the doctors tell her what to do. These days there is SO much more help and medical knowledge about MS so your daughter is fortunate in that respect. But because it is an auto-immune disease, any thing she can do to live a happy, healthy stress-free life will be beneficial: healthy diet, exercise, meditation, yoga, herbs, nature, deep breathing, laughter, etc. Most important that she stop smoking or eating junk food in excess if she does that now. (Most people these days are pretty sensible about this; if they are sick they cut out the poisonous habits). Hope your news continues to be positive. And listen to the folks here who have been through this firsthand!
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Subject: RE: BS: No where else to go... From: catspaw49 Date: 19 Mar 02 - 10:37 AM Hey Anna...........Let me cho Sinsull's advice: "Screw "responsive". You and Glenn take care of each other, do what you have to do for your family, then come back to us when you are up to it. We will be here for you." And we'll be here to listen and provide whatever we can. You and Glenn need to take good care to keep your spirits up. Amy seems to be doing quite well as does her fiance in handling this. My love to all of you. {{{{{{{{{{{{{{{{{{{{{{{{BIG SPAW HUG}}}}}}}}}}}}}}}}}}}}}}}}}}} Spaw |
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Subject: RE: BS: No where else to go... From: Rick Fielding Date: 19 Mar 02 - 10:42 AM Dear Anna, I just want to lend my voice to all those who understand just how important "anecdotal" advice based on personal experience is. I can't tell you how many times over the last four years on Mudcat, I've been steered in good directions.....from the tiniest (and under the situation you're now dealing with) unimportant music-related issues, to much larger ones with far more serious consequences. I have very little faith in "authority" but a great deal in the wisdom of everyday folks confronting a crisis. Keep hanging in. Rick |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 19 Mar 02 - 09:33 PM Anna, Is this steroid Solu Medrol? That one sure did help me the first time I got it. Art |
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Subject: RE: BS: No where else to go... From: GUEST,mgarvey@pacifier.com Date: 19 Mar 02 - 10:21 PM please do a google search under MS and fatty acids..also probably MS and leaky gut..or autoimmune and leaky gut...Follow the research of Dr. Mary Enig...a fat researcher...I don't know if she gets into MS or not but general health for sure.. None of us should be eating any artificial margerines or trans fats...and people of Irish, Scandinavian and Native American ancestry need fish because they don't metabolize certain fatty acids...this all might be related to MS...so see if you can follow the trail... here is a place to start.. http://www.direct-ms.org/nutritional.html certain things won't hurt, like eating more fish, so I'd urge her to do that... mg |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 19 Mar 02 - 11:08 PM {{{{{{{{{MORE HUGS}}}}}}}}}} Tomorrow (Wednesday) should be her third day of a five day regimen. I'm not sure of her schedule, but I had the IV's three times a day. I could taste the meds after about 45 minutes. Butter mints helped! By the third day I was so loopy I volunteered to help the doctors and nurses when an emergency involving the police happened in the hospital! I remember them looking at me suspiciously. They also took my chart off the door after they caught me reading it. Then there were the consults with physical therapists and speech therapists...totally useless in my case...but I tried to keep an open mind. Amy will laugh a lot now. And in my opinion (not the opinion of many others), she will speak from her heart. The things she says may not make sense, but you know her and can interpret what she means if you really, really listen. Of course, you've been warned of the possible depression to come after tapering off the steroids. You, Amy and everyone around both of you are about to venture into uncharted waters. GODSPEED. {{{{{{{MORE HUGS}}}}}}}}}} Mary |
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Subject: RE: BS: No where else to go... From: annamill Date: 20 Mar 02 - 07:58 AM Amy loves fish! She is left alone at night because Robert works at night. Last night I had a class I had to go to and my husband told me she had called. Thank you for all the hugs. I told Amy about all the good thoughts and hugs you're all sending her and she is very grateful. I pass on all the advice. She told me to thank you for her and as soon as she can see she'll come in and thank you herself. Love, Anna
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 21 Mar 02 - 10:09 PM Whew, I can't relate to what Mary In Ky. is saying. I had just 3 days of Solu Medrol at Mayo Clinic. One bag introvenously, just ONCE A DAY. Other than using some inapropriate language with a nurse who "just didn't understand" I thought, and wanting to eat everything in sight, I can't recall any terrible side effects at all. Art Thieme |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 21 Mar 02 - 11:09 PM Art, you reminded me of two things I had totally forgotten. I also felt like everyone around me "just doesn't get it." And I was so hungry, I ate the parsley and orange rinds that came with my meals for decoration. When you get time, Anna, let us know how things are going. {{{{{{{{{HUGS}}}}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: annamill Date: 22 Mar 02 - 08:02 AM Art, she is taking Solu Medrol and yesterday she was talking strangely. I haven't heard her use any bad language though ;-) She is very hungry and Robert is having a hard time keeping her away from "Comfort Foods". Today is the last day of steroids. I'm not sure when she starts the Avonex. That stuff costs over $900 per 4 weeks of shots!!! How do people afford it?? Her insurance will only pay $500 of it. I'm not sure how she plans on handling the rest. I will help as much as I can, but there must be some sort of help out there. She's in touch with the MS Society and Social Security. I suggested perhaps some sort of governmant help. Any other suggestions? Thank you. Love Anna |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 22 Mar 02 - 08:52 AM Anna, that insurance battle is one we all go through. Mine has been an absolute nightmare! Each state is different, and after lots of turmoil in Kentucky (legislators know something should be done, just not sure what) I was one of 50 people in the entire state over a year ago that got on a program that the legislature provided. It's probably changed now, it seems to change every year. My Betaseron costs $900 per month, so the insurance company just raised my rates to that. On the new program it's less than that, forgot just how much. But the MS Society has lots of information and counseling for any problems you run into. All this depends on your state, unfortunately. Also, the MS Society has a program to register every person diagnosed with MS. The name of the program is "Every Person Counts." It's important to have large number of people with a disease in order to get research dollars. Right now the MS drugs come under the orphan drug act. Also, all the AIDS and Spinal research helps. {{{{{{{{{{HUGS}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 22 Mar 02 - 10:03 PM Anna Dear!!! Please forgive me, I just thought of something that I had forgotten about. It should set your mind at ease...I wish I had remembered it earlier. There is a Betaseron Foundation to assist people who need help paying for their drug. They paid for mine for almost a year when the #$%^&* insurance company wouldn't pay. It's run by the folks from the drug company, Berlex, which makes Betaseron, and they are great people to work with. I assume there is a similar group with the drug Avonex. I would never have heard about it except that a technician in the doctor's office mentioned it. The MS Society probably has info for you. The last thing you and Amy need to worry about is the #$%^& insurance company. There is a network of folks like me who can help you fight 'em. {{{{{{{{{{{HUGS}}}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 23 Mar 02 - 12:03 AM Luckily,my insurance covers 100% of my Avonex cost. It also is about $900.00 a month. Check with the Avonex website that I referred to earlier in this thread. Seems I remember something about them offering or referring to financial aid. Anna,When I first started on Avonex,I was sent a brochure kit with a video. I'm sure Amy will get something similar when she starts on her meds,but in the meantime,I'd be more than happy to give her/you mine. Email or call if you're interested. Please remember,There is support for everyone effected by MS. My kids were pretty small when I was diagnosed.And with the help I found in local MS support groups, I found ways to help my kids to understand the changes that were going on in all of our lives. Best of thoughts for everyone. Ron. |
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Subject: RE: BS: No where else to go... From: Hollowfox Date: 23 Mar 02 - 09:43 AM I can't offer any advice, but I can put in a token folkloric observation, just to make the thread "folk", if not "musical".*g* There are a lot of tales where naming the demon/adversary is the first step in defeating it. At least now you know what you're fighting. |
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Subject: RE: BS: No where else to go... From: Celtic Soul Date: 23 Mar 02 - 09:51 AM Hon, it's happening to you too, so don't feel so bad about the opening comment. Mothers are tied by the heart to their kids, and it's natural for you to feel the pain ans fear your child suffers. It is also natural for you to want to help fix it, no matter *how* independent you raised her to be. Your daughter needs you, no questions about it. No matter how old we get, when we're afraid, love from a Mother can still help. As to the problem; I say go guns a-blazing and do *everything* within your grasp. A 2nd or 3rd opinion is not outside of the normal protocol in medicine, *especially* considering the severity of the symptoms. However, as the Mother of a grown child, all you can do is strongly suggest a course of action, let her choose, and then be there for her emotionally. My thoughts and prayers go out to you...let us know how things go. |
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Subject: RE: BS: No where else to go... From: Celtic Soul Date: 23 Mar 02 - 10:12 AM Serves me right for not reading all the way through before posting... I have heard of alternative therapies for MS. This subject was brought up in another thread. I am sure someone more Mudcat literate would be able to find it. But there are some alternatives to the usual medicinal approaches. Just a thought. And the best to you and yours. |
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Subject: RE: BS: No where else to go... From: Jeri Date: 23 Mar 02 - 11:37 AM Some clickies: Nutritional Info (mgarvey) Betaseron (Berlex) page HealthTalk pages about MS The Betaseron Foundation (Betaseron is interferon beta-1b, Avonex is interferon beta-1a) Avonex website (Dharmabum) Site is cookie-intensive and crashed my browser - your milage may vary. |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 23 Mar 02 - 11:51 AM Thanks for the links, Jeri. I noticed on the HealthTalk page it had an article by one of my second opinion doctors in Atlanta. As a matter of fact, he was one of the early users of MRI way back in the 80's! |
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Subject: RE: BS: No where else to go... From: katlaughing Date: 23 Mar 02 - 12:15 PM Anna, thanks for the update. It boggles my mind that the wealthiest country in the world fails so utterably in healthcare for its citizens. How in the world can the drug companies dare to charge so much for something so desparately needed? I know all of the usual answers; it just makes me mind reel to know they are allowed to do so. It is outrageous and unconscionable. Sorry for the rant, it just makes me very angry when I hear of people who have to pay more than most home mortgages, etc. for drugs, let alone healthcare! Lots of love and {{{{{{{HUGS}}}}}}} kat & rog |
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Subject: RE: BS: No where else to go... From: CapriUni Date: 23 Mar 02 - 12:42 PM This thread is getting long, and the subject has evolved considerably since it began (thank goodness!). So I posted a new thread, here. |
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Subject: RE: BS: No where else to go... From: GUEST Date: 19 Apr 02 - 01:35 AM Robert Frost - in Death of the Hired Hand made the same statement.
Essentially, home is where you go...when there is no place left to go. |
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Subject: RE: BS: No where else to go... From: Stephen L. Rich Date: 20 Apr 02 - 01:18 AM My thoughts and prayers are with you and Amy. Near as I can tell you've already done the most reasonable thing that one CAN do in a situation like this. You came to friends. After sifting through all of the medical contacts which others have sent you the only other thing that you can do is what you were already doing -- what you've always done as a parent -- you are there for her. We are here for you. Stephen |