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

[Jamiet]

Annmarie....Tomorrow is a big day, please let us know ASAP.

I have a good feeling about tomorrow.....i'm praying for you friend.........

Please try to relax, make sure you point out "bad" muscles to the EMG guy....MAKE SURE HE TEST YOUR TONGUE....

Hang in there buddy ...........

Rgds,

Jamie

[jimercat]

Ditto....

Let us know...

[ZenArcher]

I hope all the news is good. Keep us posted.

[mamaoftwo]

Sending +ve thoughts your way for a very -ve EMG. I know how scared you must be going back for this appointment. No sleep, knot in the stomach etc. Try to remain calm as hard as it is and know that there are a ton of people here on this board thinking of you.

[jimercat]

What did the doc say about your EMG?

[pldo]

Annmarie,

Waiting and praying ...

[CindyM]

Annmarie - Are you back from your test yet? I like to think you are out celebrating some sort of good news. Let us know! Cindy

[guwainengle]

Hi Anneemarie-- Good News..

Who did the EMG this time-- DR S?

Any clue from them what they think is the issue or do they need an abnormal emg?

G

[lhagsjr]

1.) You should definitely be happy, it beats the alternative.

2.) One word of advice, get the full written report sent to you.

3.) You sound like definitely NO ALS. You have been sick for a while, the EMG would have shown something of concern....

[mamaoftwo]

Annmarie

That is fantastic. I am so pleased for you. You make me feel like there is hope for me since you have some similar symptoms to me, esp the hand atrophy (I think you have that), the tongue pain etc. I am just so happy for you. I have a feeling that you, Jamie and Leslie will all be fine in the end - once they figure out what the hell is wrong with the 3 of you. Hey, maybe you all have the same thing!!
Anyway, great news. What did the neuro say? Definitely not als based on today's visit, right?
What other suggestions did he have?
Jamie was right - he knew it would be good today. :-D

[lhagsjr]

from where?

[TomR1972]

Hi Annmarie,

How long was the actual testing? When my neuro's assistant did the emg/ncv it took only about 20 min total. I assume that was not a very thorough assessment of my condition. If you don't mind telling us about the actual testing etc etc that would be great.

I am so happy that they havnt found anything "bad" thus far. No news is good news, kinda. I know how you feel, something is wrong, you dont want bad news but you want news that will tell you what the hell is happening. Bunch of us stuck in limbo land, lets keep together!!!

[Jamiet]

Whooooo hoooooo!!!!

but darnit..... i now how you feel. It's great...but no answers.

It's good that it was normal.

What do all you people think is wrong with annmarie, leslie, lou and i.....it's strange yall...

rgds,

jamie

[ltr]

Hey Annmarie - tried to call you when we came back from our trip.....I am so glad that the EMG didn't show signs of als. I do wish it showed signs of what is happening. I really am not a good person to ask about how much weight I would put on it, because, as you know, my two EMG's have been clean, but my biopsy was consistent with polymyositis. My EMG's clearly should have shouted myopathy. The docs are baffled. My CPK's should have shouted muscle damage, but were normal. The docs are baffled. Unfortunately, there are atypical cases for all of these neuromuscular diseases and you happen to be one of them (as well as Jamie, Lou, me, Tom and a couple others).

I think we all have something that is probably simple, right under their nose, but we're scraping by it. My endocrinologist is the best. She said she won't just watch me deteriorate, she's scared they're missing something easy. Personally, I think all of us mentioned above are suffering some sort of myopathy, but which one is the problem....and the most important reason is why. Without fixing the why we will always have it or it will always come back after treatments.

You will, or maybe already are, have a big let down over this because you still don't have answers. But, please still be happy it didn't show the als signs. Love ya. Leslie

[pldo]

Annmarie,

I am glad they said normal :). I hope that they are able to find out what is bothering you though.

[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 dx, 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

[jimercat]

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