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Re: clear atrophie of left lower arm

PostPosted: March 31st, 2016, 5:29 am
by German2
Dear bibi,

oh dear! This is really awful! Here in the reha I talked to some people with strange symptoms, too, and no diagnosis..One lady is falling constantly, another one had several herniated discs, but as far as I can see, there is really no muscle at her body..I had to think immedately at MND. She told me she lost 15 kg of weight...I am not sure, if herniated dics are doing this. ...But maybe this is because MY brain cannot think of anything else than MND. My left arm get worse each day...Now I have ergo sessions. I hope they can see what it is. This cant' be just from Suclus ulner nerve syndrom..Drop me a line, of you know more....

GErman

Re: clear atrophie of left lower arm

PostPosted: March 31st, 2016, 10:46 am
by leaflea
Hi German2,

I don't remember if anyone ever mentioned CMT or Charcot-Marie-Tooth to you? It has NOTHING to do with your teeth. Do you have high foot arches? I'm becoming extremely suspicious of this in my own case. You and I share some similarities too - doesn't often show up in our forties, but sometimes it does and I wonder if that makes it harder to diagnose or further from consideration? Check it out!

https://en.wikipedia.org/wiki/Charcot–Marie–Tooth_disease

I have looked into it and people do talk of twitching as well.

Leanne

Re: clear atrophie of left lower arm

PostPosted: March 31st, 2016, 3:20 pm
by German2
Dear Leflea,

yes, I do have high arches since that all has begun....maybe...Actually the pain in my arms are so strong that I think about amputation...And it hurts to keep my head on my shoulders..I have beginning atrophy on my shoulders, too, but completely symmetrical...I dont know how to proceed. Pain is too strong...I just want to stop it...

Re: clear atrophie of left lower arm

PostPosted: April 2nd, 2016, 3:00 am
by German2
Though my left hand is getting quite uncoordinated more and more each day, the doctors asked my now to take a Xanax in the evening. As I made my own good experience with it before, against muscle stiffness, I recognizethat the almost unbearable pain got much better since I take it... :?: Ok, I take it together with Arcoxia knowing that this is my "holy combination"..Yesterday I started with knitting to get my hands better...let's hope, all that measures together with the sports programm here helps me to bring me forward. Any slight improvement is welcome...

Re: clear atrophie of left lower arm

PostPosted: April 2nd, 2016, 7:04 am
by German2
...as for the knitting..this is frustrating, as I realize the decreasing coordination of left hand...;-( The hand has got even smaller than before..Don't know if there is really hope..

Can anyone tell me wether a Sulcus Ulnar nerve syndrom can do all this, too? Weakness in hand, arm, muscle wasting in lower arm, pain in lower arm. I have the motor part of the nerve affected and nerve conduction speed is reduced. But I have similar problems on the right sight, just less intense...

Re: clear atrophie of left lower arm

PostPosted: April 2nd, 2016, 8:11 am
by German2
but on the other hand, I see also my shoulders getting atrophied...and I think the physios here see that too...

Re: clear atrophie of left lower arm

PostPosted: April 2nd, 2016, 1:53 pm
by Yuliasir
German, if 'sulcus ulnar' means compression or chronic inflammation of ulnar nerve - yes and it is expected result of progression. Not often now (in the times of manual milking and in carpenters it was more prominent), but still now it can happen too, especially if your nerve is inflammed due to any autoimmune condition. The fact you have reaction on cortisole supports that diagnosis. Burning pain in the arms also is supportive for local lower motor neuron damage.
For our motor neurons no matter why they are damaged and where - at the root level (as in ALS) or at the level of axon (as it happens in ulnat compression diseases). Manifestation is the same - weakness and finally paresis. In case of root damage, it is painless and irreversible, in case of local trauma - you got neurogenic pains, muscle wasting, stiffness, specific finger position (so called monkey hand, with thumb getting closer to the rest of fingers, etc.

Read here abut ulnar neuropathy http://emedicine.medscape.com/article/1141515-clinical

and you would find almost all of your symptomes.

By the way, prognosis is rather favourable even for prolonged symptomes, and only in case of severe atrophy it is less favourable, but still not deadly.

Re: clear atrophie of left lower arm

PostPosted: April 2nd, 2016, 1:56 pm
by leaflea
Have you investigated possibility of Charcot Marie tooth? I've also seen it lol led with perimeopause.

Re: clear atrophie of left lower arm

PostPosted: April 2nd, 2016, 1:57 pm
by leaflea
Have you investigated possibility of Charcot Marie tooth? I've also seen it linked with perimeopause.

Re: clear atrophie of left lower arm

PostPosted: April 3rd, 2016, 5:57 am
by German2
Hi Leanne,

yes, I read the description..maybe...Actually I am driven by another idea. The Xanax helped immediately. The pain in my arms stopped immediately and did not come back up to now..even my uncoordinated left hand has improved today...That is an amazing effect which I did not expect at all...I took 0,5 mg Xanax yesterday...
I think my motorneurons are firing and firing and are making me stiff muscles and pain...Maybe I am crazy to even think about the stiff-person syndrom because it is so rare. But I met a lady here in the reha clinic who had someting whith just 450 cases worldwide. And just because her husband was so insisting that she is not psychotic, she is still alive...

So maybe there is s.th. wrong with my GABA Rezeptor....Any opinions?

Re: clear atrophie of left lower arm

PostPosted: April 3rd, 2016, 6:02 am
by German2
Thank you Yuliasir,

that is a very detailed description which I did not find in the German pages...Yes, the position of my thumb has indeed changed...hard to describe...Some compagnions already told me my hands look like paws..though I still can move all of my fingers. Just my left ringfinger got weak and the is overstrechable. NOt like claws but the opposite.

And maybe I have more than one problem. I have this crepitation in the left ellbow when I move. This would fit to the swelled nerve which showed up in the sono..At the right sight there is the indication that I have a conduction block over the ulnar nerve...

I don't know exactly what is happening. but I am happy that I could improve my painful situation and even the paresis and uncoordination in my hands (which might have been due to the strong pain. So strong that it got hardly unbearable..) seems to be reversible for a while..But I always forget that I already sat in the ER with exactly that problem and than it improved for a while and came back. In general my problems are getting worse in circles...

Re: clear atrophie of left lower arm

PostPosted: April 3rd, 2016, 8:15 am
by Yuliasir
yes. claw-like hand is too a typical symptom of ulnar nerve damage.

I suppose you finally may be diagnosed with some kind of ulnar neuropathy since it is progressing really slowly (and you had one bout before), probably of autoimmune nature...

Re: clear atrophie of left lower arm

PostPosted: April 3rd, 2016, 8:40 am
by German2
Yes, right. I had weak left hand first time in middle of 2013, together with the bginning of heavy worm like twitching at the beginning.

So I speculate:
as it is s.th. systematic I might end up with AI PNP (due to GM1 and Gd1b Gangliosid antibodies appearing from time to time on a low level and due to conduction block and ulnar nerve involvement)
or s.th. like Stiff person syndrom with my muscle tension which can be triggered, and the immediate release by Xanax, which would be typical.
or any other neuropathy.
But as for the noise sensivity attacks, I think it is s.th. with CNS integrated and not just peripheral

My latest symptoms:
sometimes stabbing pains in foot bottom.
one old "new" symptom: drawing pain in the shins
and sometimes my feet seems to stick to the ground.

There are some more, but as I was in a total underfunction of my thyroid gland (hashimoto) without noticing at once, I lay it on this (fatigue, word finding issues, gaining weight, depression, complete desorientation - I woke up in the middle of the night without knowing where and who I am!!! - ..it was too obvious but it was approved by my thyroid markers)

Re: clear atrophie of left lower arm

PostPosted: April 5th, 2016, 5:06 am
by German2
A new young doctor was at my room today at ward round. I described my symptoms, showed my hands, told her about the new intensity of left foot twitching...Of course she was looking immediately to the other doctor who answered that ALS would be excluded. But after that I felt depressed again. Because if I speak to the medical staff about my own afraid of having MND they look at me as if I am weiered. Now I have several appt. with the house own consultant. But we really have a very bad chemistry together. And now they all want me to take Pregabalin.

I don't know if I should take it...

Re: clear atrophie of left lower arm

PostPosted: April 5th, 2016, 7:11 am
by Yuliasir
Pregabalin is usually very good for the pains of your kind (neurogenic ones) - those burning you complain for.