View Full Version : Oh God Nooo!Degenerative disease of the Nervous System(Unspecified)


Hyperman87
05-31-13, 09:25 PM
I'm not doing great. It seems I have an illness of the nervous system(not Parkinson's disease afterall :mad:) that my doctors cannot put a name to. Which is not good because it could be fatal(as I was told, or maybe it isn't?) & I could have symptoms of most known neurological disorders & diseases without having the conditions that cause them.


This is more heartbreaking than most of the known illnesses of the nervous system! What the hell?:(

Fortune
05-31-13, 10:21 PM
Sympathies about the uncertainty. I hope they can nail it down and it's not as serious as it sounds.

Hyperman87
05-31-13, 11:13 PM
My ADHD might not even be, typical ADHD(anymore?) It might be a symptom of this nervous system disease( That docs can't put a name to.)

Fortune
05-31-13, 11:16 PM
:( ...

ginniebean
05-31-13, 11:22 PM
Oh sweetheart! I'm just heart broken for you!!! I know it's got to be just maddening that you can't find out what's wrong. I am just keeping my fingers crossed that not lonly will you find out what is going on, but that it can be treated if not cured!

Blanched Dubois
06-01-13, 12:33 AM
My ADHD might not even be, typical ADHD(anymore?) It might be a symptom of this nervous system disease( That docs can't put a name to.)

You will get it figured out.

Thinking good thoughts of you and for you.

salleh
06-01-13, 12:49 AM
egad, that's a royal b**** ...and here I was sitting here, feeling sorry for myself about my ADHD .....( living with MIke shoves my shortcomings right in my face) .....and then I read this ......

oh darling boy....I wish this weren't happening to you .....and I hope you find a doctor who will unravel the mystery, and finds out what is the matter ......

...the only comfort I might add is that what you have, whatever that might be, is not just you having it ....there has to be some other people who have it too....even if it's very rare.....it's just a matter of figuring the symptoms out and what they add up to ,.....

.....I wish House was a real life doctor ......you need a brilliant diagnostitian .....

....sending you good intense find out thoughts ......

dvdnvwls
06-01-13, 03:36 AM
I really hope you and doctors can figure out this mystery soon. Not knowing must be difficult.

One tiny advantage (if there could be such a thing in a situation like this) is that your condition sounds rare and puzzling, and some of the best medical minds are attracted to solving the rare and puzzling.

My best wishes to you.

sarek
06-01-13, 05:26 AM
I am dreadfully sorry to hear this. I have a friend in a similar situation(though his condition is likely way different from yours).
Lets hope they will figure it out soon. I presume there is a bunch of tests scheduled for you?

Asylum
06-01-13, 05:45 AM
I'm sorry you're going through this, I'm hoping you can get some clearer answers soon.

Crazygirl79
06-01-13, 05:49 AM
(((((Hugs)))))

Sel xo

TygerSan
06-01-13, 11:44 AM
((((Hugs)))) In my family (aunts/uncles/grandparents), one has ALS (Lou Gherig's) and another died of Alzheimer's. Degenerative diseases suck!

(Still wondering if a genetic test might not give you a clue as to what you're dealing with. There are dopamine responsive dystonias and other similar syndromes that might help you get some kind of treatment). . . Out of curiosity, why don't they think Parkinson's?

This program is incredibly difficult to get into (emphasis on the incredibly) but it might not be a bad thing to at least give them a call:

http://rarediseases.info.nih.gov/research/pages/27/undiagnosed-diseases-program

midnightstar
06-01-13, 12:16 PM
(((((((((Hugs))))))))))) I'm sorry to hear this Hyperman, I hope they can help you soon :(

Twiggy
06-01-13, 12:40 PM
At least you're still alive!

Hyperman87
06-01-13, 10:03 PM
:( I have been formally diagnosed with Essential Tremor,most medical lit describes it as just that a tremor. In fact ET can share so many symptoms of Parkinson's disease. That for some ET patients like me it is Parkinson's disease.:(


PARKINSONISM


A Parkinsonism is a medical disorder, some of whose symptoms can coincide with those of Parkinson's Disease. Consequently somebody can be wrongly diagnosed with Parkinson's Disease due to having Parkinsonism - a medical disorder that to some extent merely resembles Parkinson's Disease.



ESSENTIAL TREMOR

Essential tremor is commonly described as an action tremor (getting worse when trying to use the affected muscle), but not resting tremor, and with rigidity often not even mentioned. For more information go to : Essential Tremor. Although that might describe Essential Tremor in its purest form, in practice there is far less difference between Essential Tremor and Parkinson's Disease than is often assumed. The prevalence of Parkinson's Disease in those people with Essential Tremor is more than 24 times greater than expected. Some people have both, or at least some of the other. The overlap of symptoms suggest that rather than being separate disorders, that they are actually different aspects of the same medical disorder. Parkinson's Disease and Parkinsonism can also occur simultaneously with Essential Tremor. In those cases the degree of tremor, rigidity, and functional disability did not differ from those people with idiopathic Parkinson's Disease. Hand tremor predominated (as it does in Parkinsonís Disease), and occurred in nearly all cases, followed by head tremor, voice tremor, neck, face, leg, tongue and trunk tremor. Most other tremors occurred in association with hand tremor. Walking difficulties in Essential Tremor are common. About half of patients have associated dystonia, including cervical dystonia, writer's cramp, spasmodic dysphonia, and cranial dystonia, and 20% of the patients had associated parkinsonism. Olfactory dysfunction (loss of sense of smell) is common in Parkinsonís Disease. However, it has also been reported to occur in patients with Essential Tremor.

Too bad my neuro & GP never told me that.

ginniebean
06-01-13, 10:15 PM
Hman!

Ihave a link for you, all about essential tremors and maybe even some support I didn't look. (hope this isn't breaking any rules)

http://www.essentialtremor.org/

dvdnvwls
06-01-13, 10:29 PM
Essential tremor sucks a lot less than "ominous mystery disease" did. Still, not happy news. I guess we know the topic of your upcoming research project. :(

Breathe. Good thoughts coming your way...

tudorose
06-10-13, 04:12 AM
I understand how this feels. I took a couple of months break from coming here when it was thought I might have lupus. Thankfully I don't and have been dx with fibromyalgia instead. Better than lupus but not better than RRV which is what we had thought it was for 2 years. The pain and fatigue hasn't changed but now it just has a diff label. I'm struggling a lot and feel so detached. Want to reach out but can't. Write posts or replies and then delete them. HMan this still sucks. I'm glad it won't kill you but it still sucks dealing with it. I hope we can both find some relief soon.

Lunacie
06-10-13, 10:36 AM
This sounds so similar to what a friend has been going through. He's been
having problems for at least 10 years involving many visits to see doctors
in Kansas City and St. Louis. He's 19 and just finished his freshman year in
college.

The current diagnosis is likely some form of MD (muscular dystrophy) and
therapy has improved things some. In middle school he was diagnosed with
ADHD, but that may have been early stages of MD.

When he started college last fall he was using crutches or a wheelchair.
Now he is back to walking on his own most of the time using a cane.

I'm not suggesting that you have MD, only that the process of diagnosis
seems similar to what my friend has been through. Last year he was
granted disability status.