Hi there,now I have a real Atrophie on the back of my hand...I don't know what to do...I am just back from ALS Ambulance a few weeks ago - without this Atrophy - . They say - no ALS - due to clinical. Now that I have this Atrophie ( a big whole appeared almost over night) I feel more than lost.How sure can I be that it is s.th. else than ALS? What can I do now...I am more than desperate. I feel like getting crazy!I know it would hardly be possible to give me some reassurance in that case...but me be a few opinions might help me..
Help! Possible Non-ALS Atrophie
- Thread starter Deutsche
- Start date
it is possible to give you reassurance because atrophy never emerges during the night. Defintely something strange happens to you but atrophy happened at that rate should a) mean your muscles are rellally dissolved b) you must have sky high CPK then (do not know if you had checked it) c) your hands should not be able to operate then (no muscle no movement).how's about your hand mobility, is it affected?
No Yulisair, thank god I can move my hand and fingers normal. CPK was not tested. I see since weeks that muscles on top of hand getting deeper. Now there is a hole on top of ancle of ringfinger. It is there since 2 days, getting deeper and deeper. That frightens me very much...Maybe I know more tomorrow. I was so happy with proven hashimoto and hormones work quite well. I felt much better, relieved. But those crazy wholes drive me mad...
German 2, I cannot give you reassurance since I am not a doctor, and even if I were, it is not possible to make a medical diagnosis via internet. Yet, I’m going to give you my own opinion and experience regarding atrophy. It’s true that ALS is a muscle atrophy disease as you can notice from its name (Amyotrophic=muscle atrophy), nevertheless I think the concept of atrophy can be misleading because unless a thorough clinical exam is done by a true specialist it’s not easy to pick up atrophy in the beginning. And if atrophy is so pronounced that it is clearly seen by a blind man from a distance of one mile, then huge muscle weakness must be present. You cannot loose muscles to the point where it makes holes, or make a hand or a leg looks much thinner than the other one, without noticing any weakness. I’ve seen neuros, I know people who have seen neuros, and I’ve read on this forum about many people who have seen neuros. Rarely the neuro checks for atrophy in the absence of weakness, and most of the time he checks for weakness only. My neuro did not ask me to remove all my clothes so he could check every muscle for atrophy. He looked for weakness, he checked my reflexes and that’s it. The reason is that a little body asymmetry is normal, while huge and obvious atrophy would come with a lot of weakness. Sometimes it’s like people truly believe that they can have their whole leg atrophied to the size of a straw and still run a marathon. That’s ridiculous.I had true leg atrophy 8 years ago, after some complications due to an ACL surgery. Well, I couldn’t climb a stair (it was impossible) and while lying in bed I couldn’t lift my leg, not even an inch. That’s the result of a true atrophy. After the onset of my twitching, I witnessed many holes in my hands, arms, legs, thumbs, thigh, quadriceps etc. In the beginning each time I used to freak out and though my end was near. But then, time was going on, months were passing and still not a single sign of weakness… In a couple of months when you will see that your strength is still the same you will accept the fact that your muscles are not dying or becoming atrophied due to a super rare neurological disease.There is a quote from a doctor somewhere on this forum saying that proportionally weakness is much more present than atrophy, so a little atrophy is usually accompanied by huge symptoms of weakness.Use the search option and check how many people here panicked over what they thought was some hand atrophy, though after some time nothing sinister happened.
Dear JoshSon,thank you! The fact that atrophy has to be accompanied by weekness calmes me down a bit. No weakness...But tomorrow morning I know more. At my GP they think that the whole is really worth a visit at a hand surgery office. So I am there tomorrow morning. And after that I'll visit a neuro doc...Waiting is no longer my business...after 1,5 years of symptoms and 9 and a half month of fasciculations my nerves are so tensed and I feel so down and exhausted of all the ups and downs...waste of life. REally! But I think most of you went through this, too....
That’s true Deutsche, we’ve all passed by that. The problem with BFS is that Anxiety is the most severe symptom and not fasciculation or the consequences of fasciculation. I really suggest that after you see your GP and your neuro once more, you start some true and deep behavioral changes. Running in the same circle will make you do the same loop over and over. Twitching, anxiety, internet, self-tests, looking for atrophy, internet again, anxiety again, visiting doctors again etc. is a downward path with no end. Somewhere on this gloomy way a big STOP must be put, and lifestyle changes undertaken; sometimes with the help of a specialist if necessary
Yes, I tried to. And my new diagnosos of hashimoto gave me a bit saftey..I also have that kind of specialist, but she always tells me, I can just sit and wait and observe myself...this is really no help to get out of the circle. She never gives me some reassurence, though I have an exclusion of xxx from an ALS ambulance several weeks ago. She just said, ok than it gets a bit more unlikely...and that she not really believe the hashimoto diagnosis which causes a lot of anxiety due to lack of certain hormones. That doubles my problems. Maybe I have chosen the wrong specialist.
Back from hand surgeon....all normal, he said. "Relax". So opposite to my therapist and another GP doctor, he thinks it's all in range. Maybe I have to show to a neuro in a later stage, he said..With that I can take a deep breath actually...And I received a link today, that hashimoto (which I have) can cause even myophatie...Maybe this is a good explanation. Thank you all for your supporting words!!
After all I just want to give an update about the new informations I have now...also concerning my holes and dents....I have a new GP meanwhile and he sent me to see a further neuro who would be very excellent.This neuro which I visited on Friday told me after clinical...."Yes, there is something which attacks your nerve system, making your muscle decline." 
He was the first one, telling me this. Today he took some blood work and he is very sure, that it is s.th. like borrelia (which were positive in a general searching test, but further testing is necessary) or s.th. autoimmune (I have Hashimoto and this is often accompanied by another autoimmune desease), or even Sarkoidose (which would also not be fine). He is sure, that my fasciluations come from Hashimoto. This would be one of the most frequent reasons for fasciculations he told me...Now I have to wait 2 weeks until outcome of bloodwork...meanwhile I have so much pain in my feet that I can hardly walk...I cannot say that I feel the same anxiety as before. It is more a kind of resignation. I have the feeling that my life will never be the same. I can just hope, that the neuro finds something that stopps attacking my nerve system (sensible nerves and motoric ones) early enough to prevent me from wheelchair. So for me, it seems that it is not just BFS...but hopefully s.th. which can be treated.... :crying:
He was the first one, telling me this. Today he took some blood work and he is very sure, that it is s.th. like borrelia (which were positive in a general searching test, but further testing is necessary) or s.th. autoimmune (I have Hashimoto and this is often accompanied by another autoimmune desease), or even Sarkoidose (which would also not be fine). He is sure, that my fasciluations come from Hashimoto. This would be one of the most frequent reasons for fasciculations he told me...Now I have to wait 2 weeks until outcome of bloodwork...meanwhile I have so much pain in my feet that I can hardly walk...I cannot say that I feel the same anxiety as before. It is more a kind of resignation. I have the feeling that my life will never be the same. I can just hope, that the neuro finds something that stopps attacking my nerve system (sensible nerves and motoric ones) early enough to prevent me from wheelchair. So for me, it seems that it is not just BFS...but hopefully s.th. which can be treated.... :crying:I suppose you could look at it that way. Or you can say to yourself whew I don't have ***. Most here never get an explanation for their symptoms. They don't have a treatable illness for their twitching. They just deal with it, and in the back of their head on some level wonder from time to time if they have something more sinister. You have the opportunity to figure this out and have it treated. This is a glass half full kind of situation for you.
Dear Shawn,you are right. In this two weeks there seems to be some light at the end of tunnel. But what, if the outcome is...nothing can be found. Then it was the train in the tunnel, running straigth into me..not the light at the end. Because then I know, s.th. destroys my nerves but I cannot figure out what. Just 2 weeks of a little hope....And my pain gets stronger and stronger..