Thinking of YOu Annmarie.....i'm praying

[puzzled36]

Annmarie, I go an ALS specialist at Wash U in St. Louis. He apparently is the sh**. Professor at Wash U and his name is on a jillion articles about ALS, MD, myopathy. He told me that he has had 1 patient in 15 years of practice that had an initially negative EMG that was positive 6 months later. He also said that true fasciculations (caused by denervation) should show up on EMG well before a peson ever even feels weak.

Be happy. I know its frustrating because without a diagnosed, people dont believe your ill. We all believe you and know exactly how you feel. You have something but it probably isnt ALS. Think about that...thats a gift right there. Do a happy dance and screw what other people think, eventually you'll figure out what it is or maybe you'll just get better and never know. Either way, if you dont have it - Rejoice!

Gina

 

[patricia1]

Great news annamarie I never thought you had ALS. I am sooooo happy for you. Try to go on a nice vacation and really relax for a while You been under alot of stress with all whats been going on , I wish you well, Pat

 

[guwainengle]

They told me that stress makes the fasciculations worse-- so does lack of sleep and anxiety... Well if all of that makes them worse-- what started them in the 1st place. Anne what was the tounge EMG like-- I will have this the next time I go there? Did the muscles in you hands show any sign of fasciculations during or before the test?

G

 

[brooksea]

Well Annmarie I would like to say this is good news, but you still don't know what is wrong!

I hope you will find the answer like all the rest who are in limbo!

 

[vmd]

Very happy to hear the news, annmarie - now you can relax a little and try to enjoy life!

 

[vmd]

Thank you annmarie. Worrying is part of our situation, but in your case a clean emg is certainly good news.

I am very pessimistic myself. Most recently, the left wrist atrophy is advanced and I can't twist open certain bottle tops. This weakness is a bad sign. I had my first full day of classes yesterday and it was very tiring. I especially had problems lecturing, as you might imagine, given my bulbar symptoms. The voice wanes after a while and it's raspy. I don't see myself making it to the end of the semester, but God will decide that.

 

[myooshka]

I fully understand how you are glad your emg was normal but when you are still sick you are not rejoicing. I have not had an emg yet but when my mri, lumbar puncture,ncs came back normal I burst into tears and no one the dr,my husband could understand why I was crying. Because we still don't have answers we do not jump up and down in happiness. I have the clonus as well I know this is not normal. I understand you stll fear als as there are some, if I am correct, patricia that had normal emg.

 

[patricia1]

Hi my emg was normal because I only had slurred speech,My nuero explained there was no other involvement so when he did the emg the nerves were normal and no one did my tongue. Also I had no twitching fascis weakness pain athropy, so the emg would be normal, The people on this forum complaint about twitching atropy weakness drop foot falling If that shows normal emg than I wouldnt worry about ALS .

 

[ltr]

Pat - that makes sense to a lay person such as us, but I thought that once the motor neurons were dying it didn't matter what part of your body was effected, it would show anyway,

 

[patricia1]

no thats not true because my legs are normal on my emg my upper arms shows damage ao I guess it shows as it progresses

 

[mamaoftwo]

My neuro told me that if you have bulbar symptoms it shows only in paraspinals and not in limb EMGs so if Pat only had her arm and leg done for example, then yes, it makes sense that her EMG was negative.

 

[patricia1]

they never did the bulbar region never. Only my arms legs back Pat