Here we go again...

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lhagsjr

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new neuro appointment tomorrow at 9 AM. Pray for me.

Thanks,
Lou
 

CindyM

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Hi Lou- you must be on your way back from the appointment by now...Hope all is well. Cindy
 

crystalkk

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Lou,

Hope everything is fine.

please let us know everything the dr said?

crystalkk
 

Jamiet

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Lou,

whats the results of your appt?
 

hopingforthebest

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So how did you do?

Lou

Have been praying that Jefferson docs have the wisdom to know exactly what to do with you!

So what did they say?
 

lhagsjr

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OK, here is the deal...

First off, I want to thank David, AL, Cindy and whoever else came up with the idea of this board and whoever is responsible for keeping it running. If I didnt have this board I dont know what I would have done. The support I got last night/today for just an appointment was awesome. Plenty of Private Messages, etc. You guys know who u are and u are awesome...

Now, the appointment. The appointment was scheduled with the Director of Neuromuscular Division of Jefferson Hospital which is a pretty big institution here in Philadelphia. When I walked in I spoke to 2 neuros at first. One a resident and the other was a student. The resident did the exam. This exam was VERY VERY thorough, even more extensive then the one at the ALS clinic. Of course, strength was great. Ive never complained of strength problems throughout this process(now a year long). Walk on tippy toes, heals, etc. all OK. They looked at my tongue and the student said, it looks a little uneven but the resident said yes a very little uneven but Im not concerned because its not furry? He said if there is atrophy it has a furry look to it? They saw 1 fasiculation while in the office, which is the first time that happened. The reflexes were slightly brisk. Finally, the atrophy dispute. The resident did not think so. I showed him places were I see atrophy. Again, he wasnt concerned.

Finally, after about a 45 minute exam, the man came in. The director. He did about a 15 minute exam himself. Again, no atrophy in his mind. Not concerned at all. He is going to his EMG on next Wednesday(Halloween) to put my mind at ease. Then a follow up appointment the week after that. Things move quick with this practice. This will be my 3rd EMG since March. I dont know how I feel about the EMG. I really dont. I dont see a positive coming out of it. I mean if something horrible shows up now, of course that is devastating(Last one was in June). If nothing shows up, where do I go from here? This will pretty much spell the end of the doctors if this EMG comes back basically clean like the other 2. I do have a question, do any PALS who have limb onset have clean EMGS?

So thats were I stand, kind of confused. Of course I hope the EMG comes out OK again but my question is, where to come from there? look at other options other then neuromuscular? should i try to lyme route?

Oh, and they prescribed Neurontin for the twitching. Is anyone else taking this for twitching?
 

brooksea

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sorry Lou that you did not really get any answers! wouldn't wish this stuff on any one, but don't know what to tell ya as far as looking elsewhere for a diagnosed. I'm sure others may have an opinion.
 

comfortable with ALS

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lou

I am glad to hear about your apt. That has got to give you some relief?! i think if your emg comes out good you should feel really good...but who am i to say that ive had 4 and stil scared but i have a mental disorder/anxiety so it makes it harder for me! I really pray that you dont have als, so you can get on and be happy with your wife and have little cute babies...i think it makes it worse that this is hard to diagnosed but i think you are good to go.. i did the lyme test and mine came out neg so did my potassium channels. i was so bummed.. you could try that i think jamie knows a lot about that! i will pray for you tonite.. drink a beer for me please..ttyl jenny and babygirl
 

Icanmanz

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Hi lou! We'll keep you in our prayers. Hope it's something that can be treated! About Neurontin, hmmmmm, is that the same medication that Al took here a while back? I may be wrong, but I believe I remember Al posting something about it. I'm not sure!

Irma
 

ltr

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Lou - it sounds like, if this emg is clean, you should start down a different path to find out what is going on.....a very, very good rheumatologist and endocrinologist. I have found, with my diagnosis, that most likely the reason I have a neuromuscular disease is related to one of these fields and the neuros don't know much, or really care much, about them or why. They just want to treat the neuromuscular stuff and that's that. Glad to hear about your exam. I've been saying that sometimes the "best" docs aren't the way to go and you went from the "best" down a notch and got a better exam. That has been my experience also.
 

mamaoftwo

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Lou - I have been on neurontin for 6mths for neuropathic pain. It has dramatically reduced the fasics too - to the point where I can sometimes get through a day and not really have noticed one. I was on 100mg x 3 per day at first - did nothing. Now I take 300mg x3 per day and it is way better. Good luck. Psychologically, i felt better once the twitching wasnt going 24/7.
 

mamaoftwo

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something else I meant to add

Someone posted a while back saying that if neurontin alleviates the twitches, then they are less likely to be related to ALS. I think it was PegB (who has possible MMN). At any rate, I have tried to take hope from that though I always thought a fasic was a fasic if you see what I mean. I guess her neuro felt that benign fasics were more likely to respond to neurontin. Peg, if that isnt correct, plse let me know. i dont want to mislead anyone.
Lou, fyi, there is a thread on here about neurontin being linked to ALS onset. I have read it, researched the drug, checked it out with the 3 members of my family who are physicians and for me, the pain relief far outweighs any risk associated with it. You are in the same boat as me in some ways since our symptoms started before we took the drug so if it does in any way "cause" ALS, then something else started ours! But do the reading and decide what is right for you. It's like any drug - there are risks and side effects and the drug will affect everyone differently. Good luck.
 

lhagsjr

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dosage

they started me at 300 mg/3 times a day also...
 
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