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monster

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I've tried adding this to my previous thread "is there anyone like me" but it's been closed.

I have a long history and my emg picked up only fasci in 2011 and 2012, diagnosed with BFS. 2013 emg and clinical was said to be COMPLETELY clean/normal by my third Als specialist. That seems strange since i know I have hyperreflexia, Hoffman, and sometimes a jaw jerk.

My muscles are flabby, lumpy, and 'feel' weak, I have no clinical weakness. Exercising can't produce muscle growth. I've been losing muscles bulk for some time now, slowly. My feelings are, and it's just my opinion, that it's not caused by BFS, but I'm not the one with a advance degree in Als like my doctors. It's just hard for me to believe. I know how I feel.

This past November I showed my hometown neurologist, and all the Als specialist since last year, how my muscle bulk has diminished. My tricep muscles are especially flabby. In his report he called it atrophy. I was surprised. I just had a emg done a few weeks earlier, by the specialist, and it was said to be clean. I realize atrophy can be caused by many things but given my situation and symptoms at a whole, has me concerned.

I always read here if the emg is clean= no ALS.

Does anyone know how many neurons have to die before the emg picks it up? If the atrophy is caused by Als?

I've tested out of everything.
 
Have you had a muscle bios py? It is not als but there is something going on. It took 5 years to get my answers. All you can do is be patient as hard as that is. We have all been through this, waiting and worrying.

Look at the MDA site and see if you fit something there. I don't believe is searching the net for answers but some just can't help it. I looked at first and scared myself, everything seemed to fit my symp toms. I quit that because I don't have the education or experience to figure it out. I let the drs do it.

I had to see several drs and get passed from one to the next, but I did get answers.
 
No, I have not had a muscle biopsy. None of the specialist want to do anymore testing. I will ask again at my next appt.

I know they keep saying no Als/pls but I have it in my head they are just saying that because the day of the appt I don't meet the criteria but it will progress into it in time. My hometown neurologist said my concerns are appropriate.

The third specialist said it would be Als not pls because of my fasciculations. Then they all say bfs.

Thanks for your advice. You are always so kind and helpful.
 
Well, I would not go into an appointment with als in mind or vocalize it. Keeping an open mind to all the possibilities will serve you best. I had never heard of mito before the dr said it. I also did not know that there was adult onset of MD. All you can really do is relax and take what comes, learn to work around what is happening to you.

I came to realize that a name to my problem did not change the way I live, all it did was confirm I was not crazy thinking it was all in my head. Work on doing what you can do and figuring out how to accomplish what you want to do until they figure out what is going on. The worrying and what ifs are a waste of time that can be better spent on making memories, laughing, living and loving.
 
I do understand and you are right. There is nothing I can do but live the best I can. I've been trying but as the months pass i just feel worse.

I was denied for long term care insurance last year when I applied. I still work for now but my job is very physical. I take many breaks just to get through the day. I need my health insurance and I support myself.

A diagnosis won't make my symptom go away but I would've done something differently had I knew from the beginning. Instead the doctors just keep reassuring me I'm fine.


Vicki, How long did you feel weak before the doctors noticed there was a problem? If you don't mind me asking?
 
My weakness was noticed by my dr. I lived with it 5 years before finding out what it was. I just assumed it was because I was getting older that I couldn't do what I was used too. I went to the dr. because I was having trouble walking. It was a slipping sensation and I waited 6 months before I got scared and went.
 
my post went to mod...it will show up later.
 
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