BS: No where else to go...

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

Subject: RE: BS: No where else to go...
From: annamill
Date: 11 Mar 02 - 04:48 PM

Amy, her name is Amy.

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.

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

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

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

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...

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.

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

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.

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.

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.

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

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

Subject: RE: BS: No where else to go...
From: jeffp
Date: 11 Mar 02 - 04:22 PM

Ann, check your PMs.

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

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

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

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

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.

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.

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.

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

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

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.

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.

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!

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.

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