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Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 4:05 am
by German2
Hi there,

I have 2 years of symtpoms (sensible issues, muscle loss, pain), 15 month of twitching (though not much). Antibodies against my nervous system (ganglioside).
In the hospital diagnosed with double sides sulcus ulnar nerve syndrom.
Since a few weeks I am now fighting against weakness in my legs to keep my muscle strength. I do daily training. With slight success. My legs feel stronger again. But I wonder why I have to fight for my muscle strength since 2 years.
Today I was again at a neuro, who gave me a sep/mep of legs (sensible and motoric nerve conduction test, because they did not in hospital). It was all right.
But due to my symptoms he referred my to another specialist to get a third opinion.
Now I have to wait again for 5 weeks to see the specialist. 5 weeks of anxiousness and uncertainty...

I don't know how to stand that all any longer. We move into another home and I still don't know my future..It is like a never ending story..

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 4:15 am
by German2
Wow, seems to be a good day. I've got an earlier appt. for next monday. Somebody has cancelled his appt...

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 6:09 am
by LKP1231
At least you've been fortunate to get these appts. That doesn't happen where I live. And you know it's not *** and will not end your life. I know you are struggling, I'm not saying you are not but you do have good things on your side.

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 6:18 am
by German2
Thank you LPK! To be honest, mnd is always in my head...I can't stop thinking about it...

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 6:42 am
by LKP1231
But they would have found that by now. They have found other things on you but not that. I go for my second opinion with specialist today but they already found motor denervation in my legs. I don't know what he will say today. Probably send me into the city with a 3 month wait.

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 6:45 am
by German2
But they also did tell you it is not mnd, you posted that. But nevertheless, I know how you feel...It is also like a complete reset, if you have your next appt..

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 8:19 am
by LKP1231
Well my neuro kind of reneged on that. Said what I have could be signs of it but he still feels it's my back so that must be explored.

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 8:54 am
by German2
And your appt. is today? That is good....I feel like dying because of my anxiousness and don't know how to manage to move into our new house on friday...Keep my fingers crossed for you!!

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 10:21 am
by LKP1231
Yes but I found out he's not a neuromuscular specialist just another neurologist. I'm going but now I scheduled an appt with a specialist in another month. They do say there will be cancellations tho so it should be sooner. It isn't going to end?!

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 12:56 pm
by Tweek
Hi German,

I have been reading you every time you post here since a while.

Do keep in mind that a lot of specialists think that BFS must be autoimmune related, contrary to ALS. You know that you have antibodies against your nervous system.

You should stop asking specialists. In europe, they don't know anything about BFS, that's why they are worrying for you.

I am french, and I have some of your symptoms : a bit of muscle loss, double sulcus ulnar nerve syndrom, etc...

In the french forum, I have been trying to explain how it could be related with irritated nerves due to autoimmune disease, and compression feelings. Alas, my english sprachkenntnisse is not good enough to translate it in english.

I keep my finger crossed for you. But I don't really worry for you, and I don't really worry for me.

BFS is not harmless, but you won't die from it. I'm almost sure you "weakness" is not so bad. And even if it is, a lot of autoimmune diseases induce weakness (Guillain-barré, etc...) and still are not so schlimm.

You really should relax, and try diets known to improve autoimmune diseases.

Be strong,

Tweek.

Re: Again referred to specialist - getting crazy

PostPosted: October 14th, 2014, 10:51 pm
by German2
Hi Tweek,

thank you for your words...yes I have an autoimmune desease - hashimoto. And maybe the rest is also ai. I hope so much...But I know that there is indeed s.th., killing my strength. At first I just had to fight for the strength in my left hand. Then for both hands. Now in legs..It is symmetrical But the muscles get soft somehow. Daily training helps a bit. I can walk again like normal now. But how is this coming...
btw your english is good, I think. I am also not native as you know :)