Muscle Atrophy and Pain Increase

Highlights Only
Dear Bibi,but obviously it is something inflammatory..! So there is hope for you! I had a higher crp just once...I asked for a more experienced neuro today, because I do not know how to stand the rehabilitation plan (4 weeks). I had to drive to the ER with my older daughter today, I myself felt like staying there..Then I had the conversation with the neuro in my clinic here...she agreed on the atrophy and weakness in left arm. And she realized my problems to find the right words. I often used the wrong ones...now I get another schedule...with logopaedic and neurophsychology treatment..She said it can often just be measered during time whether it is ALS or not...I should be happy, that I do not have a final diagnosis yet and in my reports would be just the "suspected ALS". Ohhgood to know!!!..My next (private) appointment at neurmuscular ambulance is 2nd of May...Another new symptom: pins and needles at a certain part of the back...Today I was about to go back with my husband and kids to our home town (5 hours drive)...But they asked my to give it a try...I just hope that the health problems of my daughter will not appear again. Next children hospital is about an hour to drive...It is NOT very compfortable to have twitches AND atrophy and clinical weakness.... :eek:
 
Dear German I understand your fear and frustration , offcourse no one wish a final diagnose , but no diagnose is also hard to live with if You have symptomes . One time i Was also told that only time Can tell . I heard of a woman Who had problems with her hands. She had clonus and a bad EMG , se also had fascikulations . She Was " suspected " with Als . She had several EMG s during 4 years and The final one Was fine and she Was told that it now Was very unlikely to be Als. I hope that You Will have some improvement during your stay that Will point away from Als .Thinking of You Bibi
 
Dear Bibi,thanks for your encouraging post....I have problems with my hands, too. I realized it in my "hand group". Fine motoric is very bad. My arms are weak...this night felt like paresis...and I thought..now I am there, now I am there. Willing to break up this rehabilitation programm...I am sent to the gym each day, train coordination and so on. But no chance to put weight on my arms..Yesterday I was told that I am lacking natrium in the blood. I have to take a supplement now. My second thought was...why? Could it have s.th. to do with my hurting colon..and my inflammation there..? Maybe I am also lacking some other things. Then I realized that I have strong hypothyreodism actually, gaining weight every day...beeing heavily depressed, cannot find the right words ...all signs showing me that I am also lacking thyroid hormones. So I raised my dosage today..The worst thing which drives my really nuts is the heavy burning pain of my lower arms. I really thought about amputation already...It is just half a joke. But I know that there are some other measures before that. And that strong burning pain is my hope that it is indicating s.th. else then ALS...Maybe they set me on cortisone here..I would give it a try. Last time it worked...
 
Dear German !So Many health issues , it is so depressing not to have an ( treatable ) diagnosis.I Went to The reumatolog today , because of pain in my left arm , i have a bursitis and she gave me steroid infection. But i cant raise my arm and now she thinks i have a frozen shoulder too. I had it in Right arm 2012-2014 and When The shoulder was ok , i had pain in hip and back so i Went to a fysioterapeut Who told me my muscletonus Was Wrong , few days later i had twitches in feet .... And later it spread to my legs , hands face.... . Later today i saw my GP because i had fever for 4 weeks . She wants me to have boodworks done to rulle out some cancers in blood or bonemarrow. Like You i feel this nightmare dont stop.
 
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
 
Hi Deutsche,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!–Marie–Tooth_disease I have looked into it and people do talk of twitching as well.Leanne
 
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...
 
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... :unsure: 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...
 
...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...
 
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 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.
 
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?
 
Thank you Gracely,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...
 
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...
 
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 peripheralMy latest symptoms: sometimes stabbing pains in foot bottom. one old "new" symptom: drawing pain in the shinsand 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)
 
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...
 
I do not get it yet..(of couse I have it at home, like many other meds, but I will have a clear order to take it from present therapists). Since I take xanax the pain stayed mainly away, but the coordination problems of my hands get worse and worse each day. 10 minutes ago I had a a galvanisation bath of my arms and legs. Meaning that water was powered by electricity. I felt it in my legs but nothing in my arms. The lady who supervised it told me that my sensitivity is already gone...I have the feeling that my arms have just a few days to be alive..Needless to say how I feel....
 

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