Old 07-13-2017, 05:30 PM #1 (permalink)
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Join Date: 2017
City: Wernigerode
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Country: GE
Interest: I am interested in learning about ALS/MND.
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Join Date: 2017
City: Wernigerode
State: ST
Country: GE
Interest: I am interested in learning about ALS/MND.
Posts: 1
guentherguenther is on a distinguished road
Default 10 months of searching - do I have to be worried?

Hello everyone,

I (German guy) have been spending some time on these forums for the last weeks.

Great work all of you somehow affected do here!
The reason I registered here today is that I am facing nerve problems since autumn 2016 and the search (with many turns) still goes on.

It all started after having some kind of bad diarrhea with high fever for one day. Afterwards my feet and hands became a bit numb and I got a very heavy feeling like "1000 ants" going over (itchy and electric feeling).
Because it went worse, I went to the local hospital, where lots of diagnosis (MRI, eeg, evp, reflexes, velocities of nerves, blood & urine testing) was done, but nothing was found so far. Doctors told me something like "postinfectious myelitis".

The initial symptoms went better afterwards (some weeks), until I got some relapses after some infects in the following winter.

I didn't give the reoccuring symptoms much attention, but noticed, that the movement of hands, arms and legs became more and more shaky - some kind of action tremor - and my muscles got much faster exhausted then before (janurary 2017).

This was the reason to visit the neurologist. We agreed to keep an eye on that.

In february 2017 first and sporadic muscle twitching occured and my feet sometimes felt like vibrating (electric or ant feeling slowly changed to vibrating). When this got worse, my neuro did an emg and my family doctor lots of blood testing (march 2017, no results).

I arranged with those vibrations / twitching and it got less over the weeks (but not gone completely). The tremor did stay and my muscles often felt sore after simplest workout or just taking a walk.

For the next three months weakness (not clinical, more exhaustion-type), problems with fine motor skills and tremor increased and I even got problems with finding words, mixing them up or finding the right vocals (e instead of a or e instead of o).

So I went to another hospital in Berlin (UKB, may/june 2017) where they did:
MRI, eeg, nerve velocity, blood & urine testing, spinal tap
to exclude e.g. multiple sclerosis.

They found some slightly increased cell numbers and general abnormalities regarding leucozytes and proteins in liquor, but nothing specific for MS, CIS or other autoimmune / inflammatory diseases.

Afterwards twitching / small vibrations and fasciculations began to increase in always the same spots for almost 5 weeks now.
this is:

my feet (heavy heavy vibrating and visible twitching, nonstop all day, I even feel it while walking)

front part of tongue (vibrating feeling, shaky, when I put out)

face (sporadic fasciculations)

left shoulder (one small part of the muscle twitches heavily after and while some seconds of tension)

lower legs (constant small fasciculations)

stomach (sporadic fasciculations)

hands (constantly vibrating slightly)

Next to that, my partner often tells me, that I begin to mumble or speak more washy (that in combination with fasciculations is the reason why I found this forum).

Although I have had an emg just 4 months ago - is it right to ask for another one because of worsening of my symptoms?
How can I face the (maybe wrong) anxiety of developing an MND?
What do you think of my situation?
How can you describe your fasciculations? (The old problem difference between bfs and als)
When is the point where an emg can show changes?
Can you track back ALS/MND beginnings to special events like illnesses / stress?

I hope this posting is not too long for you.

Thanks for your attention and the amount of energy you're putting into this.

Last edited by guentherguenther : 07-13-2017 at 05:38 PM Reason: readability
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autoimmune, back, bfs, clinical, diagnosis, emg, eye, family, fasciculations, hope, mnd, mri, muscle twitching, neurologist, shoulder, sporadic, stress, symptoms, tongue, tremor, twitches, twitching, weakness, worried, wrong


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