New situation - need support

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New situation - need support

Postby German2 on March 12th, 2015, 11:15 am

Hi there,

today I was again in that hospital for an neurological examination. This time it took several hours...
The outcome of the NCV: the motoric nerves in my left arm and left leg are definintely not ok...The woman who did it was very experienced and she asked me if I do have already weakness. And that it is not psychosomatic at all. She told me that some deseases develop over time. She would experience that every day...
So now I know my growing pain is not in my head.

I feel very bad and yes...have nearly no words left. Maybe someone can help me with some ideas, what else can I expect apaprt from MND? MS was definitely excluded...
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Re: New situation - need support

Postby TwitchyDoc on March 12th, 2015, 1:15 pm

Not ok how? Thats important
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Re: New situation - need support

Postby German2 on March 12th, 2015, 1:26 pm

I do not know yet. She was not allowed to tell me. The problem is, that the head of department of this hospital already wrote a report, which says it is all anxiety driven apart from sulcus ulnar nerve compressio (sensible). This was 4 weeks ago. Today the examination was ordered by a deputy and conducted by a more experienced woman.

to be honest I am not sure, wether they dare to change the report and tell me the values. In the nerve sono, my sulcus ulnar nerve was swollen. But I have same problems and growing pain in the right arm, and that was fine. And the tarsal tunnel sono was fine, but obviously not the ncv...The doctor agreed that there could be an atrophy of my right arm muscle - without beeing a desease. That was before the NCV...


to be honest, I had very strong fatigue the last weeks. It gets more and more difficult to move my head. No weakness yet, but loss of fine tuning of feet and hand. Also I have muscle pain here and there.......
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Re: New situation - need support

Postby German2 on March 13th, 2015, 7:58 am

I phoned with the neuro in hospital today. He had a very bearish attitude. He did not tell me anything...He would write a report. I asked for the motor nerve conduction. He told me it would be with borderline values but not enought to make a compression trauma out of it. Ok, as I knew before, he was not allowed to tell me something else then the chief did before. I think the hospital would loose its face if a second testing brings different results from the first one. And reputation comes first....But I know enough from the lady who did the examination. She told me that my results of motor nerves are definitely not ok and that some desease is developing. And I do believe her.
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Re: New situation - need support

Postby nickston on March 13th, 2015, 8:43 am

Well my understanding is that the ncv is typically normal in mnd. I would be more worried about abnormal needle emg, but even then it still doesn't mean mnd. Now is there a different disease process attacking the nerves? That's possible but out of our collective realm of "expertise"...
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Re: New situation - need support

Postby TwitchyDoc on March 13th, 2015, 8:45 am

The only important part of the NCV study and motor nerve study is basically F-Waves because they represent the population of motor neurons. Decreased F-Wave persistence might mean that there is a reduction.
I would say your results suggest rather slowing of responses which - along with pain - has nothing to do with ALS.
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Re: New situation - need support

Postby German2 on March 13th, 2015, 10:27 am

Ok, thank you both!! I think I will not find out anything about the waves that time...the doctor wouldn't respond. He said before he will not mix in into the discussion wether it is psychosomatic or not. So he is not willing to give me new aspects (he said that even before the examination). But he confirmed the atrophy in my lower arm. I know that my hand and feet get more and more clumsy...Meanwhile the pain is in both of my wrists and know also in my ankles and also muscles. The latter is not new..I can't do anything else then try a few alternative things, live healthy (from now on) and wait on the next appt. in a renowed ambulance in May where I haven't been before :) And maybe carpe diem as far as possible.
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Re: New situation - need support

Postby misterjuanperalta on March 13th, 2015, 2:16 pm

In other words, reduced persistence of F wave is attributed to the loss of anterior horn cells.
Last edited by misterjuanperalta on March 13th, 2015, 4:27 pm, edited 1 time in total.
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Re: New situation - need support

Postby TwitchyDoc on March 13th, 2015, 2:47 pm

misterjuanperalta wrote:Also, reduced persistence of F wave is attributed to the loss of anterior horn cells.

Quite right, as I said, but it is not the only cause. Basically anything that blocks the motor response on its way back can decrease persistence. In addition, some say it should be >80% in ulnaris/medianus but some standards say >50% is ok. Meaning for 10 impulses, at least 5 responses traverse back.
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Re: New situation - need support

Postby German2 on March 14th, 2015, 4:32 am

I just can hope that the neuro in the hospital would have told me if there is something like this going on...But I do not believe. I will make an appt. at a local neuro to check that again. But I have to admit, that my lower legs feel very weired since a few weeks.
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Re: New situation - need support

Postby German2 on March 14th, 2015, 7:24 pm

I woke up in the middle of the night, and my left leg feels tingling and numb - somehow weired..The hole day I had pain in my hands and lower arms. Since I know that my ncv of legs was so bad, I asked my husband to look for a long-term-care insurance..I have a slow progression now, that my legs are involved since November...I am not in a good mood.
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Re: New situation - need support

Postby German2 on April 1st, 2015, 1:40 am

I stayed away from this forum for a while to see, how the cellsymbiosis therapie which I started a few weeks ago, works...


The status quo:
-The pain in my lower arms is almost gone (right after my first supplement infusion).
-My fatigue is gone, I am no longer freezing, more energy
-almost no twitching

on the other hand:

-my legs feel weaker and weaker every day
-my neck has started to feel week (moving my had makes it scratching like hell)
-my depression is very hard to stand (I started to reduce my antidepressant which was not helping very well anyway and doctor told me so, trying to convince me to take another one)

On the 15th of April I have a new appt. in University for some electrophysiological testing..I am expecting the worst (last time I had recuced NCV in motor nerves).
I am feeling as I am fighting my last fight, not yet willing to give in....I had 5 infusions up to now, some against mitochondrial dysfunction and some against my kryptopyrrolurie (KPU).

My personal situation is hard to stand. My father is in hospital and needs support now for he got confused and dement - and has no other relatives. My older daughter has communion the next week. I feel like in the hardest depression I ever had due to my decay...
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Re: New situation - need support

Postby Buzznerd123 on April 1st, 2015, 3:11 am

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Last edited by Buzznerd123 on May 1st, 2016, 12:00 pm, edited 1 time in total.
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Re: New situation - need support

Postby German2 on April 1st, 2015, 11:18 am

Thanks a lot Buzznerd,

today I had one tooth extracted, which had a filled root, but it was already quite old and sometimes painfull - not good if a death tooth is painful I think- .. I just want to reduce all toxic and inflammatory potential in my body. As I do know now, I have a KPU which means a low detox capacity of my body as a sideeffect (but I was aware of that before anyway due to some reason). And I had too much contact with toxines in my life, yet (f.ex formaldehyd in my childhood home and lot more, strong medication already as a child with neuropathy as side effect and more...). So that is my personal explanation for my nerve problems. I try everything to detox my life now..No smoke, no alcohol (just some pills ;-), which I am also reducing), healthier food and lots of supplements.

If it helps, ok. It will take some time... If not...I have to walk down that roadand try to do my best to prevent my children from that.

I will let you know, how it goes....
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Re: New situation - need support

Postby Buzznerd123 on April 1st, 2015, 2:49 pm

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Re: New situation - need support

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