clear atrophie of left lower arm

[German2]

Yes, but somehow my body feels really weired...hard to describe. As if I don't feel my legs and bones, and then feeling every single bone in my body...I got so much Predni into my veins, that my skin got damaged right away. It starts to peel off...But they found no chronic inflammation signs in me. Just the damage at my left ey nerve..Ok. A few values are yet to come..
There was another lady leaving the hospital at the same time with similar problems and no diagnosis. This time she did not get cortisone. Such a high dose therapy they just do once..I did not read the side effects...

[leroyb]

Hi german,

it is really great news that they found no indication of neuro-degeneration.

Just curious if you've ever had a muscle biopsy?

[German2]

that is not completely correct. They found a leasion of my eye nerves...
Yes, I had muscle biopysy...chronic neurogenic damage was the outcome.

There IS something going on...the question is what...I have high dose cortison in body (same es with MS sufferers...). I am now reducing, and pain comes back...especially in my ellbow in which they found a ganglion and edema, and tennis ellbow...

[German2]

In the end I could not grap my mobil with my left hand....the fingers went numb even during the day. My sensitivity was defect. That is what definitely was drawn back with cortisone. I personally think that it is an underlying autoimmune condition causing me all that stuff in combination with a very bad tissue condition (ehlers-danlos..).

[German2]

So my cortisone attempt seems to have turned out unsucessfull...My neuro also thinks so...Pain in my lower arms is as strong as before today. Yesterday walking was very difficult.Could not get my feet off the ground (better today). My arms and fingers are weak again. Slight coordination problems.

As my neuro is not really an MND expert he said..ok this was ruled out from others before..He thinks it is virus and that cortisone would have been not the best option.

Though there is one approvement: mucle tone went normal..But that is not enough to say it is st. which can be treatet via cortisone....I am disappointed. Now the neurodegenerating deasease box is open again..

There is still an appt in hospital to come with some furhter bloodwork.But I do not expect much from it...

[German2]

On Friday I have got a very quick appt. for a biopsy to check for small fibre neuropathy. Today I had an MRI from my spine....Yesterday I did an emergency phone call with the hospital I was in. I had real spacticity. It was really scary and painful. It was then like a hole body cramp, even in my head...My thumb in a totally weired position....But as always, it went away...today, there was nothing. Except very uncoordinated and heavy hands, due to muscle tension in my lower arms...
Thank god, no twitching. Maybe one per day...but that seems in the range of "normal" to me ...so twitching went away with cortisone obviously...In hospital they now afraid of me having an infection (instead of ms or rheumatism), meaning virus. That is the same as my neuro thinks...

I put pressure behind diagnostics because I will excluce all possible deseases on my list. That's what my neuro recommended to me last appt.. And in the end he will give me an off label medication which fights virus..(Amantadin). He is convinced to be successfull with it. Let's wait and see...

My strongest problem is the pain in my lower arms now and the Chronic Fatigue with which I am now officially diagnosed. My also diagnose "walking disorder" comes and goes...but ok.It was not that strong as before the cortisone therapy...

[German2]

update:
Yesterday I had a follow up appointment at hospital ambulance...In the very end I had to draw a very positive cortison conclusion. The cramps and spasm seems to have ben a strong magnesium deficite...I substitued it in heavy dose and the cramps were gone after 2 days...Pain and walking disorder went in some time, but went away again...in the end, most symptoms were very much reduced:
High muscle tone: completely gone in the back
lymphedema: completely gone after one year (this was my latest finding..did not realize in the beginning)
muscle twitching almost gone
clumsiness of hands: better (not gone)
feelings of paraysis in hands/numb fingers: gone
walking disorder (diagnosed): almost gone
pain in my lower arms/ellbows: after a strong flare up actually better

Chronic fatigure: slightly reduced. I would say I can climb the stairs some times more than before. But in general it is the heavy load

the spine MRI showed some throat spine prolapses touching the nerve routes, narrow spine channelm artrosis, but would not explain my symptoms completely.
Skin biopsy: outcome still to come.
The hospital neuros decided to continue with the cortisone 5 mg prednisolon. My neuro wants me to take Amantadin for my fatigue and off label vor virus (though lumbar puncture was negative for EBV, Borreliose, and Herpes virus...) Maybe I will switch the therapy lateron...But actually I have to cope alone with two small kids and cannot gamble on my health condition..So I continue low dose cortisone..

[German2]

They were suprised by the way about the positive effect of cortisone because they found nothing pathological in my except the lesion of my eye nerve. I have one lesion in brain, but unspecific and not that new (but 2004 it was definitive not there...I checked it with an old report)..They said I have to keep an ey on it in the next years and have another brain MRI in the future..

[Yuliasir]

so good to hear you at least found some therapy nad notice some improvement!!!
It might be a non-localized inflammation or maybe a glial inflammation (not a white matter but the grey one) - some scientists suppose that glia also could be inflammed with the outcomes very similar to yours.

[German2]

Dear Yuliasir,

yes, I am again on Cortisone, 5mg Predni, which is the therapy for rheumatism...I have indeed one white gliose, which must have ben appeared between 2004 and 2012. But one is not enough...it has to be rechecked in a year or so...They found no virus in my liquor. I am acutally checked for chlamydia pneumoniae and Legionellose because titer was above normal range last time...If it shows something, I will switch to another therapy of course..
This is crucial for me because I am now single mum with two kids. Family in law turned their backs on me in a not very nice way..my husband left me mentally long time ago...

[Yuliasir]

oh my it is so incredibly sad... about your family life...

chlamydias are relatively harmless, unless you do not have them invaded your body systemically (which is impossible unless you do not have HIV/AIDS). White matter lesions are expected at our age since we are getting older, so this really is of low relevennce unless spreaded too much with the time, of course...

again. it looks so cruel to leave you alone with two small kids and with definitely not excellent health...

have my hugs
Yulia

[German2]

Thanks Yuliasir,
he would have stayed but not by heart....so it did not make sense to me.

[German2]

And now: I've got the diagnosis Small Fiber Neuropathy (it is suppesed to be, with reduced nerve fibres at arms and legs)...This does not explain all of my symptoms but I guess the burning pain and vibration is.
Not my walking disorder though..But pain went down with cortisone..Just on a very low level...
That is the only good new in my life though actually...

[German2]

This week I saw a specialized doctor in Germany for environmental deseases...so I had to drive quite far. He talked with me for 2 hours or so and had a q and a list...In the end he came to the conclusion that my brain nerves get damaged. So far so clear...My neuro came to similar conclusion (brain function disorder, extrapryramidal disorder...). He explained that my eye issues, my ear issues, my colon cramps, swallowing issues, tachycardie, eaye nerve lesions and white brain lesions and more are related to certain brain nervers. My problems include the small fibers (sfn), the large fibers (Sulcus ulnar nerve syndrom) and the vegetative fibres (Sympathicus overactivated). This does not give me any comfort. Hi things that glaucoma, dementia and parcinson are the most probable desease I can get. But ALS could also come across..Next week I go in a special environmental clinic (my neuro recommendet to), where my heavy metal status will get checked...this is controversial...but which options are left. Cortisone is helping. So viral and bacterial problems are excluded. I am told, otherwise it would have got worse...MS is excluded via spine tab. ...The doctor I once visited is sure that it all comes from my unstable neck and narrow spine channel at throat spine and that my liquor gets stuck there...I have to do some neck training now..and take some expensive suppelements...(too expensive on the long run)

This morning I woke up and could not raise my arm...But I know this story already. I am prepared for anything now anyway. The only problem is that I broke up with my husband and have to kids...so what to do if it gets serious?

[Yuliasir]

My dear,
not looking far to the worse case scenario, I must say that even divorce does not relief your husband from responsibilities he takes considering your mutual children. It is so sad to hear that you suffer so much.

have my hgs

Yulia