Bala? When did you receive a diagnosis?

[mamaoftwo]

I too am confused. Less than 2wks ago, you had a NM specialist tell you that you did not have ALS and did not need a muscle biopsy. Now, you have been told its an "aggressive form of ALS leaving you with months to live". I don't understand. Did the doctor do a u-turn o you? What happened? It seems incredible to go from such strong reassurances of "NO ALS" to your talking about ending your life - all in a little over 10 days.
If you haven't got an official diagnosis (and even if you have), don't give up yet. Many posters have told you that there are other explanations for your symptoms and while it is very frightening to face the prospect of ALS, it is also frightening to hear a young person talk of suicide.
I wish you the best in getting to the bottom of your medical issues and continue to hope for you that it is not ALS after all.

 

[CindyM]

Hey Bala, she is right. These days seem very dark to you right now. (It could be that you have felt this way before, with or without health problems.) But there are people who care and folks who can help. Please do a search for your nearest counseling agency and let the people who know how, help you with your despair. Cordially, Cindy

 

[bala80]

i'm sorry for not making it clearer. In a nutshell, muscle twitching and burning feet sensation started August, had an EMG late August which was negative. Symptoms progressed over the next month and I had a second EMG in late September which was also negative. During this whole time I was on 0.5mg clonazepam for percieved anxiety by my neuro, and was unaware that this could have affected the EMGs until I did my own research. I was dismissed as not having ALS because the EMGs were negative, I was young and had no clinically detected weakness, and because I had sensory symptoms also. They are the 2 EMGs I was referring to. As I continued to worsen, I begged for another EMG on the 15th of November, which was done reluctantly and came out abnormal. No other neuros I saw independent of him wanted do have anything to do with me (my fault because I told them about my original neuro and all the tests he had done), and my original neuro (and hence my family) thought all along I was a manic. The speed and prognosis of months is my guess judging the speed of how all of this has progressed in the space of 3 months. ALS cases would typically go from random twitching to difficulty and painful walking in much longer time frame than 3-4 months. I don't know about counselling - knowing I have done this to myself by taking some stupid herbal concoction would make what a counsellor says go in one ear and out the other.

 

[mamaoftwo]

I don't understand the clonezepam and EMG comment. I have had EMGs while taking ativan (same family of drug) and was told by 2 top neuros that it doesn't affect EMGs since the EMG measures nerve to muscle activity where this family of drugs is simply a muscle relaxant. If you found research to the contrary, Id love to see it because I find this confusing too.
Also, did your revised EMG show ALS denervation? Or was it just "abnormal" because again, you can have an "abnormal" EMG for a myriad of reasons and most of them are treatable.
Last thing - what do you mean that you did this to yourself by taking a stupid herbal concoction?
Do you really feel that you caused your own illness? Even if it is ALS and has been confirmed, no-one knows what causes it so you cannot blame yourself.
I honestly think Cindy is right and you do need to get some help.

 

[mamaoftwo]

Anxiety meds and EMGs

Bala

I just pulled this from a neuro website talking about how to get patients to relax for the EMG study:-

"If you feel significantly anxious, you may benefit from taking some medication prior to the study. Of course, you will not be able to drive to the study or home if you decide to do this. Please contact our office in advance of your study so that we can plan to see you earlier (at least a half hour) to give you some medication (usually Ativan) if you think that you might need something to help you relax for the study.."

I highly doubt that medical professionals would happily prescribe drugs that could affect the integrity of the test results. What would be the point in doing the test in the first instance?