I am back and very scared:(

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I am back and very scared:(

Postby Edina26 on June 9th, 2014, 2:34 pm

I ce been here last year in winter :( I did pretty good the whole year but now everything seems to come back .
I had moved from USa in December and I think this had to do something with my anxiety . If someone could help me just a little bit I would appreciate I am a mess and my wedding will be soon :( . Last year as I sayed I had some health problems a I took a lot of antibiotics and after that everything become a nightmare from muscle twiching to weaknes to huge anxiety been to neurologist he sayed nothing is wrong for know . I had a lot of pain in my elbows especially in right elbow pain that went from elbow to my fingers , and for a wile a tried not to use my right hand as much I had seen improvments no kore pain weaknes etc...But I deed see some atrophy in my right hand then and I see it know . So in the last week I was carying some heavy bags and I felt pain in my elbow again and since then I am stressed about it I keep looking at my atropyed hand and I am bursting in tears all the time . I will try to put some pictures if someone can take a look at them I will appreciate .
I had to keep my hand in certain light so the camera will catch the wholes that I have. Also I have to say that when I hold my nephew for a wile he is 3 years old my hand starts to hurt . I am very scared and I am a mess ...again :( thank you very much and sory for my English ( it s not my first language )
https://plus.google.com/photos/11086683 ... banner=pwa
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Re: I am back and very scared:(

Postby Edina26 on June 9th, 2014, 2:36 pm

I just resaw my pictures and I know it looks very bad :( the firs is from the left one / healty one and the next to from the right one .
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Re: I am back and very scared:(

Postby Yuliasir on June 9th, 2014, 10:05 pm

Edina
your symptomes mean compression trauma not MND. I can not see your pictures (access denied) but if you have pain increased under load AND real (not perceived) atrophy, then you should see surgeon as soon as possible because compression trauma causes atrophy of course.
But it is reversible.
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Re: I am back and very scared:(

Postby Edina26 on June 10th, 2014, 12:30 pm

Hy yuliasir , you are so nice to respond to me you were the first that sent me a message last year to , so thank you very much . I don't know how to upload pictures I will try one more time maybe a different site.
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Re: I am back and very scared:(

Postby Edina26 on June 10th, 2014, 12:51 pm

https://www.dropbox.com/s/gzlvnp6g7l44w ... 1%20PM.jpg
https://www.dropbox.com/s/lvzrkom33pqsw ... 8%20PM.jpg
https://www.dropbox.com/s/zw7kf19qltf11 ... 3%20PM.jpg
Done, I hope you can acces the photoes in Dropbox . I know I should go to see a neurologist I miss the one from USA he was very nice here in Europe they are very distant . Even if you pay your visits :( .i still have a question is enyone like my condition ? With pain in elbow hand that comes ang goes only with activity , I was so ok until now for 6 months I was having my life back until I saw doctor house episodes and I saw one patient with the one think that I fear :( and since then everything came back off course I started to push my hand to see how I am with it and then I saw the atrophy and everything started . I would really appreciate if someone could read my " desperate " message and take a look at my pictures . It is hard to be alone in this , all my family thinks I am crazy and everything starts from my had but the pain is here the atrophy is here and I just fear the worst . My future husband , oh my I don't even wanna tell him that I am scared again bc we had a lot off problems last year . Sorry for the long messages I wish everyone the best
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Re: I am back and very scared:(

Postby Edina26 on June 10th, 2014, 12:54 pm

First 2 pictures are from my damaged arm :) and the 3 one is from my good oane I had to keep my hand in certain way and certain light to see all the dents :) I see them everyday curious nobody sees them , only me .it is funny if I make a fist then everything seems normal almost normal and my hand muscles seem strong and nice shaped . Tell me what you think thank you again
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Re: I am back and very scared:(

Postby Yuliasir on June 10th, 2014, 1:10 pm

Edina,
in fact I see rather a strange buldge on your "damaged" arm (but the shadows are not favorable for any proper assesment even by non-medical person like me) - and no sign of atrophy. at least nothing which may lead to an idea of atrophy. Your muscle distibution looks perfectly normal except that slight buldge or muscle knot on your forearm which by the way may be caused by muscle inflammation at the elbow point.

As I already said, intermittent pain in the elbow and even some atrophy leads first hand to the idea of compression trauma. Check that with the surgeon or neurologist and forget about MND.

I noted also that people with true MND often neglect even clear signs like extreme wasting of the hand or leg, and I remember one of the fellows was talking about his close relative who had two hand onset, get hands atrophied so much that everybody noticed that (they were like mummy hands, 'dried out'), he was unable to rise his hand for 6 months and was really thinking he has rotator cuff problem and was not going to see a doc in hope for spontaneous resolution... but it was ALS. And this pattern (neglectuing clinical weakness) is quite strikingly frequent in ALS cases reported here by people who fear of ALS because their friends or relatives had died of it.


from your mention of BC may I guess that you are prone to health anxiety?
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Re: I am back and very scared:(

Postby Yuliasir on June 10th, 2014, 1:12 pm

my dear
if you have to keep ypur hand in a special way to see the buldges and dents, then
YOU DO NOT HAVE ATROPHY PERIOD PERIOD

believe me.
people with true atrophies do not need to use speivallight and make crazy hand gymnastics to see atrophued muscles.
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Re: I am back and very scared:(

Postby Edina26 on June 10th, 2014, 1:55 pm

I really appreciate your promt feedback you are a very nice person and I thank you for taking you time to give me a little reassurance . I do have a lot of anxiety . It's strange because if it's not my arm it's my limphoma nodes if it's not that it's lupus ( I do have rozacea ) and I just finished with the lupus testing ...I am afraid it will never stop and I will never stop woring about my health and I am missing out the fun of living life . With my hand my latest concern I do see some dents it looks just like someone took a bite from that part. I know we don't have equal sides and we are different and I am thinking if I was always like that, I am pretty sure it was not . the left one is my strong one even if Used my right the whole life , and sometimes it feels weak off course I still can do stuff with it but I do have pain when I push it ,in muscle ,elbow ,arm ,fingers depends what I do with it ...strange is that since last year I tried to avoid certain activities because if I use it too much it hurts even when I go biking my hand hurts and after that it fells weak my grip is weak for couple oh weeks . And strange is that my wrist is weak like I can't stay much on it .
You now what I fear ? That maybe one day I could not move my fingers this is what I fear ....and I think that some people do get sick even if they are young ? Wy them and not me ? I heard of people getting *** at a very young age ???and I am thinking wy should I consider myself lucky . I really think my life would be so much easier if I would not have this concerns
Oh and one more thing I do have the fasciculations all over my boys ...all over my body and it increases my anxiety so much tomorow I will go to see an orthopedist bc I have my foot in a cast and I will try to ask him about my hand will see what he sayes
Sorry for my long message it fells so good when you write your thoughts and someone gets you even just a little bit
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Re: I am back and very scared:(

Postby Yuliasir on June 10th, 2014, 2:12 pm

well, if you would not check your hand, you may end up with the lot of pain and even paresis. My sister in law had a bit of that last year. She was ingoring pains for several weeks until it did not come to unbearable one and two fingers were slightly paralysed... then she run to doctor and it took approx 6 months of physio and massage to get the hand back. Compression trauma! And she was a plain bank clerk - so even daily work was enough to cause that. She is OK now :)
oh please do not do strenous excersises for a while - at least until you would not resolve the case. All what you say - pain in elbow, wrist, arm and fingers, pain increasing with vibration and physical loads, weakened grip after vibration load - strognly supports compression trauma. Go and check that. You may need Xray or CT, nerve conduction test etc. Usually NSAIDs, massage and physio plus immobilisation or warming bandage resolve that but consult with the doctor about severity and get yourself diagnosed.
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Re: I am back and very scared:(

Postby Edina26 on June 11th, 2014, 10:06 am

So I've seen a neurologist today , I am a little disappointed , he didnt say much at all . He did some test I think the usually he sayed that he tincks that is nothing wrong with me . But he saw my hand and he sayed that it's different from the other one and he sees some atrophy but if I don't know if it's progressing or not then he cannot say anything at all. I told him I've noticed my hand since last year but I don't know if it was there before he just told me to check it every now and then and if it gets worse to go back .i told him about the pain and he sayed nothing oh I told him about my fasciculations and that I have them every day in different parts of my body but again he told me that he dosent sees them and he cannot say anything about that . If I would whant to make an emg he can send me to someone but that's in a different town about 100 miles :( I asked him if he thinks that I need one I would go but if not then I can wait to see...he said to do what I whant :( he gave me a number from a psicholog that he thank it could help me ..and that was it ...I am more depressed then before . And yes he also said that the muscle that is missing I cannot build it back so now I wait to see if its getting worse???? That will kill me day by day :(
I am so desapointed after this check up . Someone could help with an advice?
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Re: I am back and very scared:(

Postby Yuliasir on June 11th, 2014, 10:41 am

Edina, I would rather advice to see a surgeon not only neurologist.

if your muscle loss is due to compression trauma, you can build it up back (one of the new fellows reported he managed to do this). People resotre atrophied muscles after long term cast etc. so you can do it too why not!

obviously your neurologist did not see anything sinister neither in your twitches not in pains which is on my point of view a good sign. Looks like he consider you need a pro help which is also not uncommon in our condition.
as for what he said for your muscle difference, do not blame the doctor - he really can not make any decisions on the basis of single visit. You also have no idea if your hand was like that before or not. We had here a jerry2 fellow member who also was diagnosed with one hand atrophy... and then he found an old foto and noticed that his hand was ALWAYS smaller! hes 'atrophied' hand is fully functional so probably he is a kind of extreme body difference or so or managed to compensate muscle loss with extra strength... In the meantime your hand difference is NOT accompanied ny any sisnister clinical singns like reflex changes etc., otherwise the doctor would not be so easy.
you should know that if the doctor will miss a serious disease, he or she would loss a license or at least would be suspended from profession for quite a time. This is a major issue. So none of them is not interested in missing ALS or MS in the patient and even less in purposeful lying yo yuou about your health.

so my advice would be:
1. Go and see a surgeon or othropedist or whatever who is taking care about traumas.
2. On the basis of this visit decide about EMG or nerve conduction study.
3. Monitor your hand condition in the meanwhile.
4. Use psychological help suggested.

that should cover all possible 'weak points' - you would be either diagnosed with traumna and get treated, or have something (or nothing) to come to neuro back in say 3 month, and you may feel some rellief from talking to psychologist.
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Re: I am back and very scared:(

Postby Edina26 on June 11th, 2014, 11:35 am

Thank you for your message , you are nice as always . The neurologist said that he cannot say anything about the fasciculations bc he dosent see one ...and he was thinking that maybe it's all I my had he asked me if someone else saw them or only me . But I am very sure I have them bc I see those everyday so I am not nuts . But he didn't belive me even I had some in my foot that was making my little toe to move . He also said that maybe after I will find out that I have nothing I will not be satisfied and I will find something else tot think about. And I told him that I don't whant to be sick and I would love to be healty psihicaly and mentally but I see my hand every day I fell the pain everyday and I feel the wide spread fasciculations and becouse of that I cannot have a puce of mind . One more question wy do they so the emg ? It's only to find out about *** oh and he told me not to think about *** bc that could happend when I am much older , I told him that young people get it to, but I think he didn't like that I doubt his theory :( .i will se an orthopedist soon bc of my foot and I will ask him . As far for an emg I have to drive all the way there and I cannot go only in fall ...until then I'll go nuts :( .
I still fear that all my muscles will atrophy and I will die :( sory is sad but true .
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Re: I am back and very scared:(

Postby Edina26 on June 11th, 2014, 2:51 pm

I just been on a *** forum ....and now I panic :( someone else twitches? Everywhere :((( oh my gosh I don't know how I would survive this night . And a atropyed hand :( I am so so sad
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Re: I am back and very scared:(

Postby Yuliasir on June 11th, 2014, 3:14 pm

Edina,
why the hell you went to ALS forum????
dont you know you should not go there?

how many times one need to tell you that even atrophy does not mean ALS and it happens at compression trauma too?

ALS is not an atropy or pain or twitching disease.
CARVE THIS ON THE WALL. It is a disease in which your muscles become irreversibly denervated due to proceses which are not known yet. it is painless (or vice versa spastically painful if the spastic paralysis comes first but this is rare condition), silent, quick loss of function. Did you lost your hand function? Not? Then you are OK.

Atrophy due to immobilization exists and may be as much as 6 inches for several days (if the leg is broken for exampe). SIX INCHES IN circumference for several days just becasue of torn tendon (some fellows here are in panic becasue of only 2 inch of difference)!
Atrophy occurs at compression trauma because nerve is inflammed. This causes pain, some weakness, some paresis - except paresis, it fits your picture very good. This is reversible if inflammation would be healed.

I want you to understand that atrophy is not exclusively a sign of ALS. Event atrophy and twitches together are not - you need upper motor neurons denervation signs, change of reflexes etc., combination of local and central neuron degeneration etc. YOU DO NOT HAVE THAT, the doctor had seen you and did not find nothing.

holy crap it is so incredibly sad to see you acting so... so selfless, let me say...
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Re: I am back and very scared:(

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