lhagsjr
10-30-2007, 11:00 PM
My 3rd EMG is tomorrow(Wed) with my 4th Neuro...
View Full Version : Wish Me Luck...
cheryilyn
10-30-2007, 11:23 PM
Good luck:-D
crystalkk
10-31-2007, 09:29 AM
lou,
good luck!
Dr dusuoa did one of my emg's back in may.
what time is your appointment?
keep us posted
good luck!
Dr dusuoa did one of my emg's back in may.
what time is your appointment?
keep us posted
Jamiet
10-31-2007, 10:04 AM
Good Luck Lou,
Let us know the results.
rgds,
jamie
Let us know the results.
rgds,
jamie
PBA673
10-31-2007, 10:04 AM
Lou, hope you get the answer you are looking for. Best of luck.
CindyM
10-31-2007, 04:44 PM
Good luck, buddy. I hope things went well. Cindy
Jamiet
10-31-2007, 04:48 PM
Lou,
What's the results?
What's the results?
Lorie
10-31-2007, 08:32 PM
Rooting for you Lou!!! We will be watching. I hope everything turns out the way you want it to!
Lorie:-D
Lorie:-D
lhagsjr
10-31-2007, 08:54 PM
1.) I had an EMG at an ALS clinic before so I assumed this would be a step down in the level of the drs and testing. Well this EMG took an hour and a half. About 15-20 muscles. Hands, lower arms,shoulders, biceps, triceps, quads, hamstrings, ankles, calves, and for the first time parasinals and throughout the back.
2.) Absolutely ZERO denervation. This is now confirmed by 3 EMGS from March through today by 3 different neuro(one from an ALS Clinic, one from an EMG specialist at a university based hospital, and one by a local neuro). Also confirmed by a muscle biopsy in July which again showed zero denervation. Zero Fibs, fasics, PSW's again today. Believe me they were looking for them. He would leave the needle in the muscle for a minute and just listen for them. None.
3.) Motor Units were fine again.
4.) Again, the main abnormality was increased insertational activity. Which by itself really means nothing.
5.) He told me I had a few myotonic discharges in a few muscles. What does this mean? You got it, back to possible myopathy which is what the ALS doc told me back in June when he did the EMG.
6.) This Dr was just the EMG specialist, he isnt Dr overseeing me just did the test. He told me it was up to his collegue(the guy im seeing) to find out why im having these twitches and perceived atrophy. HE kept asking his assistant to check my file for CPK levels. He seemed to be very interested in those numbers, but I know they are normal from before.
Overall, Im pretty excited. It really doesnt look like ALS or MND. I mean I have to believe this. I can walk, talk, breath, eat after a year of symptoms. I havent lost strength(that I can tell). I had 3 EMGS but some really good docs and a biopsy. I have the follow up with my Dr to plan on treatment for possible myopathy or whatever he thinks this problem with me is.
What do you guys think?
2.) Absolutely ZERO denervation. This is now confirmed by 3 EMGS from March through today by 3 different neuro(one from an ALS Clinic, one from an EMG specialist at a university based hospital, and one by a local neuro). Also confirmed by a muscle biopsy in July which again showed zero denervation. Zero Fibs, fasics, PSW's again today. Believe me they were looking for them. He would leave the needle in the muscle for a minute and just listen for them. None.
3.) Motor Units were fine again.
4.) Again, the main abnormality was increased insertational activity. Which by itself really means nothing.
5.) He told me I had a few myotonic discharges in a few muscles. What does this mean? You got it, back to possible myopathy which is what the ALS doc told me back in June when he did the EMG.
6.) This Dr was just the EMG specialist, he isnt Dr overseeing me just did the test. He told me it was up to his collegue(the guy im seeing) to find out why im having these twitches and perceived atrophy. HE kept asking his assistant to check my file for CPK levels. He seemed to be very interested in those numbers, but I know they are normal from before.
Overall, Im pretty excited. It really doesnt look like ALS or MND. I mean I have to believe this. I can walk, talk, breath, eat after a year of symptoms. I havent lost strength(that I can tell). I had 3 EMGS but some really good docs and a biopsy. I have the follow up with my Dr to plan on treatment for possible myopathy or whatever he thinks this problem with me is.
What do you guys think?
mamaoftwo
10-31-2007, 09:10 PM
I think that if I were in your shoes, I would out be out getting drunk somewhere to celebrate! Great news Lou!
:-D
:-D
puzzled36
10-31-2007, 09:14 PM
Great news!! I'm very happy for you. Sounds like you can quit worrying about ALS.
Gina
Gina
trustinggod
10-31-2007, 11:20 PM
Lou,
So very happy to hear your good news. It's not ALS. You, my friend are one of the lucky ones.
God Bless,
Jeanne
So very happy to hear your good news. It's not ALS. You, my friend are one of the lucky ones.
God Bless,
Jeanne
Blizna
11-01-2007, 03:00 AM
Thats excellent! This gives hope to all undx yet.
crystalkk
11-01-2007, 08:25 AM
lou,
great,
Did dr. desousa do the emg himself?
great,
Did dr. desousa do the emg himself?
ltr
11-01-2007, 08:52 AM
Lou - I think I told you a long time ago your symptoms sounded just like mine....myopathy!! Now you need to start treatment. But just remember, it isn't always a cure all. In fact, I have been going down a pretty rocky road and often wonder how this is all going to turn out or if this is just going to be life from now on. The doctors really want a high CK for myopathy, but mine have always been normal. Don't let them rely on this because if you check the mda website and several others, it is clear that many times a patient will have normal CK levels and still have myopathy. Mine was proven with the biopsy and now a positive emg.
And about the specialists, my specialist did two needle sticks and said my emg was normal. The two local neuros got together and did the best emg I have had, an hour, many, many needle sticks, had me exercise my muscles, etc. and guess what....it showed the myopathy! Specialists aren't all they're cracked up to be.
I am really happy for you that you don't have an mnd right now, but I also sympathize with you and your illness..I know how sick you are.
And about the specialists, my specialist did two needle sticks and said my emg was normal. The two local neuros got together and did the best emg I have had, an hour, many, many needle sticks, had me exercise my muscles, etc. and guess what....it showed the myopathy! Specialists aren't all they're cracked up to be.
I am really happy for you that you don't have an mnd right now, but I also sympathize with you and your illness..I know how sick you are.
crystalkk
11-01-2007, 09:03 AM
Leslie, I agree with you about the specialist they are only looking for what's in their feild.
It is good to hear they finally found the myopathy on an emg. I know you were very worried about
your dianose being wrong. Are you feeling any better.
It is good to hear they finally found the myopathy on an emg. I know you were very worried about
your dianose being wrong. Are you feeling any better.
ltr
11-01-2007, 01:54 PM
The Prednisone has given me some more energy than I had, which is really good, but the fasciculations became worse when I started it and wake me up in the night. The cramping is pretty bad and the weakness comes and goes. I am also having a lot of vision problems, my vision is changing rapidly. None of my docs agree on my treatment and have mentioned starting methotrexate, so I just got an appointment for a second opinion to Johns Hopkins.I think this is just going to be the way I have to live for now..:( Thanks for asking!
vmd
11-01-2007, 03:15 PM
Lou:
Without loss of strength, as you have correctly stated, it is not going to be MND. Glad to hear of your results.
Without loss of strength, as you have correctly stated, it is not going to be MND. Glad to hear of your results.
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