clear atrophie of left lower arm

[German2]

....hm, dear Yuliasir, I heard of it. But to be honest it sounds different to me, then what I have...After some more research, I would estimate my body situation as a generalized Dystonie? That might be the reason why my neuro speculates parkinson....Whatever that means...The pain in my arm muscles, the pain in my neck and the growing difficulty to hold my head in a normal position...The contracted foot muscels which make insoles neccesary..the contracted intercostal area..the gorge cramps..That is all due to my high muscle tone..

[guitarguy11]

Dear German2 -

I wish I could say I have some answers for you, unfortunately I don't. But I have been reading your case and wanted to let you know I am praying for you. Happy thoughts coming your way!

Pete

[German2]

Dear Pete,

thanks a lot! That is a lot more then other people surrounding me do for me. Actually I am without pain (due to musclerelaxing meds), but soo *beep* tired. But it is good to know that pain can be reduced...I am also tired of my own case. It is so exhausting. Now I am waiting on the next check-in to hospital, hoping this time it is a better one..

[Bibi]

Hi German

I follow and understand your pain and fear. I have focal dystonia in my Right hand have had it for 14 years. 23/5 i am going to a dystonia-clinic . I have been to another dystonia- clinic before i discovered The twitching and i tried botox , but then i ad pain in my Right arm and Got a frozen shoulder . This Was in 2012-2014. The twitching started in 2014 When my shoulder Was Healed. Now i have pain in my left arm and a frozen shoulder in left side. A now i have athrophy in both shoulders and my back. The reumatologist verified this but Said it could be from The frozen shoulders . But i know i didnt have it before
I saw a neuro and i hade a short clinical and sad i have to wait for The dystonia clinic in May. He verified The athrophy but Said The same about frozen shoulders .
Have You talked to a neuro about dystonia ?

[German2]

Hi Bibi,

no...not yet. It was a microbiologist in a German forum who said, that I would have dystonia...and I have to admit, it could be fitting. For me it is not clear wheather I do have atrophy at my back or highly contracted muscles...I know that my neuro is thinking about parkinson/parkinson-Syndrom..he did not say it explicitely. But he prescribed me a dopamin medication
But I prefer to wait on the tests in the clinic where I plan to go. Dystonia belong to their spectrum as wall as neuroimmflammation.
Up to now there are - thank god - just minor neurological signs. Not a big hype...so I hope it is something slowly progressing also in the future...Oh my god Bibi, whe share a burdon...
Thanks for answering.

[German2]

...I have forgotten to mention that I have the Chronic Fatigue Syndrom and this can also cause a lot of immune trouble. So it is hard for me to seperate all the symptoms...beside my Hashimoto..

[German2]

I am in hospital now...they did a lot of tests. Including lumbar punction again..no outcome yet..no emg yet. I thi k they do not plan an emg.....Beside my stomach skin reflexes glabella reflex is missing. Does anyone know what this means??

[Yuliasir]

Hi,

really do not know what does it mean if glabella reflex is MISSING. Exacerbated glabella reflex (when patient cotinues to blink at every tap on glabella) is used in Parkinsonism diagnostics, but if you DO NOT BLINK at all - I have no idea what it could be...

UPD. I dig a bit and found that missing reflex is detected in peripheral neuritis of fascial nerve (local inflammation).

Hope this can help.

[German2]

As far as I could remember I blinked all the time. But the young doctor explained his boss it could not be evoked.

[Yuliasir]

If you blinked all the time, it means you have positive reflex, and this could be due to your too high serotonine level. It occurs on parkinson and in persons taking anti-dopamine drugs or SSRI for a long time, but you said your serotonine is too high and dopamine too low - so this is probably a reason.

normally patiens can blink for several times but then response fades (it is normal glabella reflex). If no blinks occurs at all - it is negative, if patine blinks no matter how many times doctor tap on glabella, it is positive reflex.

[German2]

It was retested again today..Reflex was positiv...I have serotonine high, dopamine normal, noradrenalin too low..since lumbar punction I go crazy from neck pain and headache...I am home for weekend but I think I have to leafe for hospital again....I feel really really sick...

[Yuliasir]

unfortunaltely headache is expected after spinal tap...

[German2]

...yes but it is the fourth day and it is getting worse. It comes from my neck..I feel really really sick. Don't know how this all ends.

[German2]

finally I am back from hospital. Outcome: they found no indication for neurodgenerative desease. They did an sep, mep, vep. The latter was abnormal, which means that my ey nerves were damaged from former inflamation. They did not think emg would be necessary. Ok, I did not try to convince them. They gave me again a lumbar puncture (and fought the subsequent horrible headache with a blood batch...of which I was afraid of at first, for it was again a spinal tab). The first outcome of liquor was ok...furhter outcome is expected. They gave me really high infusions of prednisolon whith which I feel like a locomotive. Numbness was pushed back a bit. I do not pull my left leg behind me...feelings of paresis in my arms is much better (though not gone).

They found more GAD antibodies in me than in average persons (stiff-person-syndrom), but under the cut off and not in the liquor. So it is again not enough for a diagnosis. I am filled up with cortisone actually and I have to visit the ambulance in 6 weeks. They think it is s.th. in range of rheumatism...But without dx no medication....

But it is good to know that some symptoms are reversible under prednisolon (though not completely I have to admit. Parts of my body still feel as if the bones are in the wrong places...especially my sternum). The journey did not end...I had intermittend strong twitching...actually it is gone.

[Yuliasir]

good to read you react on anti-inflammatory meds! this definitely means your disease is not MND but neuroinflammation.