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expert: you don't have MND yet..

PostPosted: February 19th, 2015, 1:53 am
by German2
Hi everyone,

after one week in hospital with suspected als/ms - with negative outcome- I am on the road again. And yesterday I had an expert appt at University...He gave me a clinical which was ok and referred to my questions as follows...: MS is clearly sorted out...ALS, well you still can develop that. I described my problems and he was the second who suspects me to have "hereditary neuropathy with pressure palsies". Ok, the genetic testing on that is already running. Today I googled that and I found that this genetic defect can also be found with some als patients..I get the outcome in April....

Now I have to handle the situation to live with an everlasting "maybe" to devellop an als...The sentence..."you still can develope it" leaves not much space for hope to get out of the cycle. I hate this situation very much. It is very fatal and I can hardly live a normal life...

Re: expert: you don't have MND yet..

PostPosted: February 19th, 2015, 2:28 am
by Yuliasir
I think diabetes is also actual for some ALS patients. Name any other chronic disease - but you can not directly drive one form another. Hereditary neuropathy with pressure palsies is what you have now - this means that your nerves are sensitive to pressure and could interrupt conduction easily when pressed - as you had seen recently with your leg. ALS is not a disease happened from pressure, here another mechanisms are suspected, possibly related to specific proteins, and it involves complete death of the neurons, not pressure sensitivity. So having neuropathy does not mean you have too much prerequisites for ALS specifically.
Each of us may develop ALS by the way. Just becasue it happens. So good way is to ask then: are my chances for ALS higher than average or not. Your expert knows for sure that you do not have MS becasue you seemingly do not have lesions and your spinal tap and/or MRi is Ok, and also becasue the palsy was too short for MS. As for ALS we just do not know any relaibale prerequisites or genetic features etc.

So I think you should not consider this as a ticket to ALS.

Re: expert: you don't have MND yet..

PostPosted: February 19th, 2015, 6:36 am
by German2
Dear Yuliasir,

thank you for your supporting words! Like always...To confirm this rare desease I have to wait on the gentesting outcome in April, but after my palsie, I think it is a possibility (Meralgia paresthetica and double sided ulnar nerve syndrom would be fitting.) Especially after experiencing something similar yesterday. I felt my other foot, laying on a chair, going "off", but I stopped by putting it on the floor again. I have some other health problems, too (colon, bleeding, spasm...and he said, if I would have a colitis ulcerosa - like my mother - it would also explain parts of my symptoms. But this is also not a good option. My mother died from colon cancer...)...So I am voting for this HPNN ;-) ...and hope it is not the ticket to MND...I know it is not funny at all. And life is not a "musical request programme"...But maybe some things will get easier if the syndrome gets a name finally...

Re: expert: you don't have MND yet..

PostPosted: February 19th, 2015, 7:29 am
by Buzznerd123
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Re: expert: you don't have MND yet..

PostPosted: February 19th, 2015, 8:14 am
by German2
Dear Buzznerd,

yes, you are absolutely right. I agree with you..I don't want to confuse members and don't want to be so negative with this any longer..it just shows the inner side of my soul. But I promise I do work on that...;-) :D

Re: expert: you don't have MND yet..

PostPosted: February 19th, 2015, 12:31 pm
by garym
German2 wrote: "maybe" to devellop an als...The sentence..."you still can develope it"


This is a 100% true fact, you can still develop als....any of us can, just like every other person on the planet. The truth of the matter is that having bfs doesn't exclude any of us from eventual als, it just doesn't increase our chances either.

Hang in there,
Gary

Re: expert: you don't have MND yet..

PostPosted: February 19th, 2015, 2:41 pm
by German2
Dear Garym, I know I should let it go...but as I seem to have some more than just bfs (maybe this hereditary pnp with pressure palsies due to double sided ulnar nerve syndrom and parestetica meralgia), I still keep on searching. I know there are others here with years of looking for their diagnosis. And this is a hard time. But I will try to hang in with the mnd idea..

Re: expert: you don't have MND yet..

PostPosted: February 25th, 2015, 11:06 am
by German2
Yesterday I was diagnosed with my fourth compression trauma: Tarsal tunnel syndrome! That is my fourth compression trauma...after meralgia paresthetica, double sided sulcus ulnar compression (not regarding my minor problems with the carpal tunnel)

My neurosurgeon checked that out clinically...I have that constant buzzing in my left foot..

He is not of the opinion that it comes from a hereditary pnp with pressure palsies (genetit testing is on the way), he would 4 clients with that - all disabled. He thinks it could be a connective tissue problem causing me all that...now my right foot starts to feel numb sometime. So it is progressing...It is very difficult for me to face that uncertainty all the time...My next investigation is a nerve sono on 12.th of March. My neurosurgeon thinks surgery is necessary for my left ulnar nerve syndrom...I am not so sure if I want that. But I have pain in both of my ellbows and lower arms..