BS: Neurological diseases

Subject: BS: Neurological diseases
From: Allan Dennehy
Date: 09 Sep 03 - 06:24 PM

My unfortunate cousin got his multiple sclerosis diagnosis a few weeeks ago. They found another shadow on his brain and he was told last Friday that he has another neur. disease as well. Something in the line of Frederikson Adonis syndrome? Apparently you become a vegetable very quickly. I'm an MS suspect myself and the doctors in Ireland have asked for my scans because of the hereditory situation. The wheels between Irland and Denmark are moving really slowly of course but my doctor has been pretty concerned over my memory loss over the last few months and he is trying without success to speeed things up.
I tried tracking down this disease on the net but I havent been able to find the correct spelling combination. Anybody know the correct spelling combination for this. Know thy enemy as the saying goes....
Thanks

Allan

Subject: RE: BS: Neurological diseases
From: McGrath of Harlow
Date: 09 Sep 03 - 07:14 PM

Might be Friedrich's Ataxia.

Good luck. I hope it turns out better than you are worried it might.

Subject: RE: BS: Neurological diseases
From: katlaughing
Date: 09 Sep 03 - 07:42 PM

Going by McGrath's suggestion, this page seems to show that Friedreichs Ataxia usually shows up in very young children, more often than in young adults. It also sounds as though people living with that particular syndrome go through several years, sometimes many years, before it gets very severe.

That site may have other information which would be helpful in identifying the one you are looking for.

I am sorry about your cousin and wish you both all the best.

kat

Subject: RE: BS: Neurological diseases
From: Bassic
Date: 09 Sep 03 - 07:43 PM

Fredrich`s Ataxia is the one I have herd of. My only experience of it was in a young male and that wasnt the prognosis that I remember about the disease. Many of these diseases are hugely variable in how they affect individuals so dont panic yet, get some good information and work from there. Good luck.

Subject: RE: BS: Neurological diseases
From: katlaughing
Date: 09 Sep 03 - 07:55 PM

Probably should have posted this page, first. You can browse all of the disorders, alphabetically, here...maybe one of them will ring a bell...good luck.

Subject: RE: BS: Neurological diseases
From: wysiwyg
Date: 09 Sep 03 - 08:03 PM

Several Catters here with MS-- good base of support, amazing amount of knowledge of current treatment, especially urgently needed rapid treatment with onset/diagnosis. Let us know, and keep thinking positive!

~Susan

Subject: RE: BS: Neurological diseases
From: harpgirl
Date: 09 Sep 03 - 08:36 PM

I know of someone with Fredrich's Ataxia. She had a long period of slow muscle wasting. Now, twenty some years after the initial diagnosis she lives in assisted living. Her mind is fine. Her motor skills are gone. I believe it is genetic. I'm not sure if the course of FA is different in different individuals.

Subject: RE: BS: Neurological diseases
From: Mary in Kentucky
Date: 09 Sep 03 - 10:14 PM

Allan, feel free to PM me with any questions. I have MS and have researched many neurological diseases for years. I too am concerned about the genetics but have learned not to jump to conclusions. I became very frustrated with coordinating my records and those of my sister's between various doctors. Keep working and be sensitive to all your relatives' fears and feelings.

Knowledge is power.

Subject: RE: BS: Neurological diseases
From: Liz the Squeak
Date: 10 Sep 03 - 02:57 AM

OK, now I'm worried.

In March/April 2002 I suffered several fainting and dizzy spells for no apparent reason. My mother has MS, and I was worried that hers started with fainting and dizzy spells.

I was referred to several specialists who listened to my concerns and then all said that MS was not genetic, was not hereditary and was not what I had.

They say I do have a genetic problem but it's coronary, rather than neurological. The neuro problem I have is benign positional vertigo - I move my head in a certain direction and I get dizzy. The coronary thing is sinus arrhythmia - irregular heartbeat. My BP was bouncing around like a flea on acid at the time and the combination of all three things was giving me the fainting/dizzy spells.

So should I be worried about MS?

Subject: RE: BS: Neurological diseases
From: Noreen
Date: 10 Sep 03 - 04:19 AM

MS is not thought to be genetically controlled, but Friedreich's Ataxia is.
I think Allan meant the doctors want to check his condition after his cousin's diagnosis.

Assuming this is the condition you mean, Allan. Lots of support available for you here in what you're going through.

Subject: RE: BS: Neurological diseases
From: Mary in Kentucky
Date: 10 Sep 03 - 08:04 AM

Read all you want to know about MS and genetics at the MS society webpage. One brochure is here. You can use the search function at that site and get lots of info.

Most MS researchers feel that genetics affects the "susceptibility" of a person for developing MS, probably due to immune system characteristics. In the US a person has ~ 1 in 750 chance of getting MS. Relatives of a person with MS have ~ 1 in 100 chance.

I think these odss are similar to my odds of having twins. Since my gggrandmother had fraternal twins, my odds were 1 in 100 ---- and I had twins!!!!!!!

These days MS is easier to diagnose than it was 20 years ago. With a good doctor and awareness you can stay on top of the situation. But as many doctors know (and I fully understand because I've witnessed it myself in my personal observations about my own physical symptoms) it's easy to read about a syptom and then see it in yourself. Objectivity is extremely difficult. But IMO not having a vent for your thoughts, feelings and fears is worse. Some people (me for example) just need to talk more.

Knowledge is power.

Subject: RE: BS: Neurological diseases
From: Rapparee
Date: 10 Sep 03 - 08:17 AM

I worked with a woman with Friedreich's Ataxia for a couple of years. Her mind was fine, but she had over twenty or so years gotten to the point where she was living in a powered three-wheel chair. Unfortunately, she also thought she could do more than she could and would sometimes over-reach for something, the chair would tip, and she'd lay under it until someone came by (she wouldn't ask for help). She had a wonderful husband; once her chair shorted out and caught fire, he suffered third-degree burns on his hands lifting her out of danger.

FA manifests itself in the young and causes progressive degeneration -- twenty years before I knew her the woman above was completely mobile, although she walked with a slight "stutter." It's also genetic -- her brother also had it.

Subject: RE: BS: Neurological diseases
From: Mary in Kentucky
Date: 10 Sep 03 - 08:24 AM

I neglected to say above that the identical twin of a peron with MS (identical genes) has a 1 in 3 chance of developing the disease.

Subject: RE: BS: Neurological diseases
From: Art Thieme
Date: 10 Sep 03 - 11:16 AM

I have it.

About a year ago my brother found the widdow of our half brother who we (I) had not seen in 55 years. She told my brother that Julian had passed away-----------------and that he had MS (among other things).

Is MS genetic?? Possibly---but probably not always. Probably a low per cnetage of the time.

I suggest you buy a pair of Levis. Go to your doctor and have him remove your genes. See if it helps. ;-)   ***SMILE*** (having a sense of humor REALLY HELPS>)

MS, like life, is a crap shoot. (And I think that's funny!!!   But I'm the guy who thinks Bill Maher's line about Schwarzenegger is funny !!!)

Love to you all,

Art

Subject: RE: BS: Neurological diseases
From: Allan Dennehy
Date: 10 Sep 03 - 08:36 PM

Thanks very much everyone including the person who PMed me. Ive been meaning to try to write my 2 year history down on a thread for months and months to get some feedback but its just been too big a mission for me. Maybe Im getting started now. Ive been sick for two years now; chronic pains, walking with a stick or crutches half the time, not walking at all a little bit of the time, spasticity, difficulty hitting the correct keyboard keys,drop everything that comes between my hands 'cept my Lowden and so forth. My doctor said from the start that it was MS but my scan and the lumbar puncture have been neg. The neuroligists cant wait to get me out of their clinics fast enough cause I dont fit their patterns so theyve sent me off for neurological rehab. This doesnt help at all of course. Ive had a bad back for 20 years but my doc and I agree that this is a lot more than back pains and the MS society over here have told me that they have loads of members that were arsed round with for up to 6 years before getting their diagnosis. Then my first cousin got almost the exact same symtons 6 months ago. My doc says that its too big a coincedence and we're hoping that the neurologists in Dublin take a good look at my scans. I can tell that there is one thing thats a lot worse than MS and that is having all the symtons but not having the diagnosis. It screws up the treatment Im getting and will slow down my pension process terribly. I wont be lying awake worrying about whether Ive got the other disease or not. Ive got a black belt in living in the present, you know, am I going to make it from the couch to the toilet, how the hell Im going to manage 2 x 3 and a half hour gigs this weekend and so forth. My friends say Im great at tackling it but I suppose you have to be. I have to get to bed now, its been a couple of really rough days. But I'll get back to this thread tomorrow when Ive gotten my ten hours sleep. So goodnight all.
PS I liked the joke, Art. My own gallows humour scares the shit out of some people.


xxxx

Allan

Subject: RE: BS: Neurological diseases
From: Mudlark
Date: 11 Sep 03 - 12:00 AM

Allan...just wanted to let you know you have this Mudcatter's support too. Anybody dealing with these sorts of chronic illness are the heros among us, as far as I'm concerned. Keep on truckin'....

Subject: RE: BS: Neurological diseases
From: Peg
Date: 11 Sep 03 - 10:10 AM

Keeping a positive attitude must help immensely. My mom has MS and diabetes, and if she had the positive attitude of some of our Catters here like Dharma and Art, she'd be better off, I am sure of it...

So do stay positive and don't worry about what hasn't been diagnosed yet.

Subject: RE: BS: Neurological diseases
From: brid widder
Date: 11 Sep 03 - 04:11 PM

Allan, this is clearly a very worrying time for you... but the Neurological diseases you mention affect the motor function of the nervous system so movement, strength, mobility may be severley affected but... so what ever happens you will NOT become 'a vegetable'

And even people who do have conditions which affect their mental ability are still human beings.

Subject: RE: BS: Neurological diseases
From: GUEST,haRPGIRL
Date: 11 Sep 03 - 04:23 PM

Hello again Allan,
I'm sorry to hear of your difficulties. I can only imagine how it feels to lose your ability to function physically in such a short time. The only thing remotely comparable that's happened to me is I went completely blind in my left eye in six months (then got a lens implant) and three years later went blind in my right eye in about eight months (and got a lens implant again). With the first eye, it was very scarey and disorienting...

Someone I've just met has primary progressive MS and he works, drives a vehicle, and uses voice recognition software to write because he is in a wheelchair and his hands don't work well. His attitude is amazing. He is determined to enjoy life in whatever condition he is in each and every day...like Art, Mary, dharmabum, CapriUni and whoever else I've left out in the MS catter crowd. These folks seemed to have figured out how to thrive despite the MS. Good luck and we'll all be rooting for you. Love, harpgirl

Subject: RE: BS: Neurological diseases
From: Allan Dennehy
Date: 11 Sep 03 - 05:15 PM

Im back again for a quick remark. Im away for the next few days and I havent even looked at the sites that some of you have so kindly suggested yet. Things move a little slowly with me sometimes if you know what I mean. I think youre all great. Back on Monday or Tues. at the latest.

All the best

Allan