posted
Second EMG today to rule out ALS. I will keep you posted on what the technicians says. Hopefully its all clear for me. Wish me Luck.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Luke,
I will be thinking good thoughts for you. I know from your recent posts you are going through a hard time.
Was your first EMG normal? My EMG and nerve conduction tests were all normal even when I was extremely symptomatic with disseminated Lyme, but docs kept thinking MS.
I also know you've been trying to get Bicillin - me, too - I'm back in that battle again and maxing out credit cards from it. But I was thinking about you and the IV Rocephin study being started for ALS patients. I know you and I see the same great LLMD. Have you talked about Rocephin given that it's used for Lyme and now possibly for ALS? I know, it's a huge money issue - that's why I keep putting it off, too.
Anyway, please post your results. And I hope the technicians and doctors are nice to you as you're going through this.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
My first EMG and Nerve Conduction Test were both normal but lots have changed since then. Hopefully its normal again but I sure would like some answers soon.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Luke,
Aren't you being treated for LD and Babs. Why are you wasitng your time with an EMG.
If they tell you that they found something on the EMG will it change your treatment course?
IMO it's just a waste of time and money esp. after you have already recieved a diagnosis.
I have personal experience with EMG having had two of them (both pre DX). Cost thousands of dollars and were of little diagnostic value.
Also, ALS is a "rule out" diagnosis. There is no one test that will tell you 100% that you have it or you don't.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
I have been told by a LLMD to get EMG and nerve conduction testing. Don't know why as I agree with Mathias that it will not prove anything. Going next week, against my better judgement.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Just got back from the test. He stuck a needle in my:
left shoulder bicep forarm (2 places) hand (2 places)
left upper leg (two places) calf (front and back) foot (OUCH! 2 places)
Tongue (2 places, under my jaw and up and also pulled tongue out and held it and jabbed it).
The doctor saw no sign of any abnormality he said. Second EMG, normal.
Makes me feel, mentally, a little better but it sure did not fix me thats for sure. I have been diagnoised with Lyme and Erichliosis HGE (positive PCR test for HGE 1:160 IGG). I am also being treated for babs although my test was negative for that. Hopefully I can get some of my good feeling back.
I still dont understand why my neck muscle has been getting smaller and my tongue is scalloping on the sides. Anyway I am metally relieved, needless to say. Thanks for your support everyone.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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bettyg
Unregistered
posted
Luke, just saw this now. Glad everything went well, and looks like a thorough testing ... pain & all!
At least you can deal with what you know you have. Don't worry about other stuff; just use that effort on getting better from what you have.
On another ALS post from someone?, I gave the name of Rob B, a Des Moines, Iowa newspaper columnist. His wife is Reka ____. Rob lost his fight last weekend to ALS after suffering for the last 9 years. I'm just rotten on remembering any names anymore! sorry...
I see in the bookstore today, his last book was just published & available to buy. He talks all about his ALS in it from what I heard.
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posted
Even though it's already been done, I have to agree w/Mathias also. You're so lucky to have a diagnosis w/a positive WB/pcr, etc. Doing more tests like EMG's is just a waste of money.
I had one done before I was diagnosed (pre-LLMD), and it showed nothing, in spite of all the jerking, twitching, tremoring, drooping, etc my body was doing at the time.
Now almost all of those symptoms have resolved after 8 months of abx...and I don't even have a positive WB like you do. Be patient. Abx will make you better. At least they have done so for me.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Happy everything was normal Luke!
I don't agree with others that tests are useless once you have a Lyme diagnosis. If you blame everything on Lyme after your diagnosis, then you may miss an equally destructive disease that could have been caught early.
It may also be important to treat symptoms of Lyme as well as the Lyme. I'm getting numerous neurological tests because I have motor tics. Yes, I think Lyme is the cause. But my doctor wants to make sure he is not missing anything.
An EMG can help you and your doctor know if the Lyme is causing nerve damage. If it is, you may wish to change treatment to help with that symptom. Also, it gives a benchmark to find out if you have increased damage in the future or if your nerves are healing with treatment.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Luke just started treatment though...
Interesting that he performed an EMG on your tongue but not the muscles along the spine on your back. That is more typical.
Glad the test was normal.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
Yes, Luke just started abx, so he can't expect to see results that quickly. That's why I recommended some patience. He already had a normal EMG once, didn't he? Was repeating it really necessary? He's got a positive WB!!! I'm curious as to your Dr's rational for repeating the EMG after the first one was normal.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there Aniek,
While I agree to test for the various symptoms this imitator gives us to rule them out...
The negative results may give the ducks reasons to call us nuts...etc...
Personally I had to undergo two emg's...pre lyme dx for post polio syndrome...negative...
post lyme dx to check for neuropathy...negative again.....
I'm guessing that the negative results are because the EMG test is faulty at detecting what's really causeing our nerve pain symptoms therefore useless for lyme folks...
Our nerve pain is not caused by the normal things that an EMG would pick up...
Our pain may be literally all in our heads in that the messages our brains send to the CNS are somehow modified due to neuroboreliosis...
IMO.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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