Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
These are most likely to be recommended by neurologists, not by LLMD's.
They are unlikely to be positive in lyme.
I had a positive one because of bilateral nerve damage due to neuroborreliosis. However, I had SSEP (somatasensory evoked potentials testing) -- commonly done in testing for multiple sclerosis.
I would not put a lot of stock in these if I were you, unless my LLMD wanted me to have one. Even if positive it is not really diagnostic for lyme.
I am not a doctor, of course -- yada yada yada...
:-)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
One of the reasons they are used are to look for myelin damage. If they find it then they might want to try steroids, since that's how they treat inflammatory demyelinating neuropathies.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Lyme can also damage myelin by repeated attacks of inflammation, but should never be treated with steroids. That is why if you have lyme you really must be treated by an LLMD, rather than just a neurologist, who is unlikely to know the difference, and can make matters much worse.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I went for the EMG, and after the first part, I'd had sufficient information to satisfy my interest.
When the second part came along, and the neurologist said, "Now I'm going to stick 4" of a needle through your bicep, and apply the same significant voltage" I looked at my teeny bicep, because I was so sick, and said, "Thank you, and Goodbye".
The whole thing is medieval: they measure the distance between two points on a limb, apply a voltage at one end, and then measure the speed at which the voltage travels along your nerves using sensors at the other end.
Good grief!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It's extremely painful. It is done to see if there is nerve damage. Do you know why the doctor wants it done? Is it to help rule out another diagnosis?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
Okay! I think I've received the info I needed from you brave souls.....thank you.
It sounds like it would not be to my benefit.
Especially if it is just another one of those tests that the lyme evades.
I have a LLMD but she is not local, where I live. I have been searching for a local doc I can trust.
Recently she (the new local doc I think I can trust but who said I ought to contact an infectious disease doc at an educational institution, who would be on top of the current trends) ordered a bone scan and suggested nerve conduction testing.
I am trying to get to the bottom of my very severe pain and what is left of the lyme/babesia/bart/myco symptoms.
I know my LLMD undertands, but I am not able to comply with her protocol anymore and the biggest problem I have is to differentiate the problems with credibility or validation to disability insurance companies, and to actually adress my real debilitating problems. It seems disability companies don't think there's anything wrong with me at all despite all of the tests my LLMD ordered which revealed several things.
Trying to figure out where to go from here!
Both with finding "evidence" that will satisfy disability. (and finding the way back to being functional in order to return to being gainfully employed)
And with determining for myself what to do, how to proceed with some specific things like my jaw/tooth pain, as well as all the other lingering things.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Gosh, I'm going through the same thing up here! Bc my FIRST HALF of my nerve conduction test was "normal" (this is debatable bc one of the numbers on the left hand side looked pretty different from that on the right to me), I'm being denied taken seriously by the provincial neurologist, which in turn disallows coverage for drugs to treat peripheral neuropathy.
I'm considering going to my provincial representative. I'm also applying to the drug company for compassionate care.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Painted. I hear your frustration!! I realize it is expensive, but a SPECT scan would be far more likely to yield a positive finding for you than an EMG. Of course, a positive SPECT scan does not absolutely positively mean lyme (it CAN conceivably be due to other things), but if you've already been dx'd with lyme, it can be very helpful to shore up a diagnosis to help with disability.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
I had an EMG done this past week and it showed CIDP.. Stinks rather have health,,,, Doc Y did test... Hopefully although no magic bullet will help with some extremely weird symptoms if approved for IVIg.
I take it this is needed for the "autoimmune" part of lyme?
Also I am st up for an entire body PET scan...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
| IP: Logged |
posted
I had this, was very, very ill at the time with all kinds of neuro symptoms including dropping things, vision, hearing, tremors, jerks, hot/cold distress, skin burning, and this test came out perfectly 'normal'. So, I am not sure what it can do for a Lymie. Believe that for me, too, it was part of an MS investigation and was called for by my neuro at the time.
otm
Posts: 314 | From east coast | Registered: Oct 2007
| IP: Logged |
Shosty
Unregistered
posted
What is CIDP?
I had this in 2001 when I first had major symptoms, and it showed mild impingement of a nerve, nothing else.
Two days ago I agreed to have it done again, just because I have a new physiatrist who is quite alternative, and quite open-minded, and he wanted to make sure my spinal issues weren't contributing to the burning/tingling, and also that I did not have a certain muscle disease.
The first part is "nerve conduction" (electric shock part) and the next part is "EMG" (muscles). I told the doctor and assistant that they should dress up for Halloween, because the whole thing makes me think of dungeons and Frankenstein!
For burning, tingling, numb feelings, it appears that these tests do not pick anything up, for some of us. If you do not want to risk having yet another negative test on your record for someone to use against you, skip it.
But if you want to make sure your nerves and muscles are okay, it's certainly one piece of a puzzle. Just make sure you have a doctor who is looking at the whole big puzzle, not just one piece.
The doctor I had for the tests said that the normal results meant the problem was in my brain, and that I had "something systemic" that was causing the symptoms, probably lupus. Noone will say Lyme, and I no longer expect it. (For me, lupus is another consideration, even if it is Lyme-induced, because I have a sky-high ANA and get sick in the sun etc.)
It may be hard chasing down a definite answer for insurance or disability. Labels are unachievable for a lot of us!
IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I had both tests a few weeks back. I felt like I'd been tasered then stabbed.
I have not gotten the results yet but see the neuro LLD on Monday, who ordered the tests. For me, he wanted to measure the extent of my peripheral neuropathy to see if IVIG might be helpful.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I've had 7 EMGs done in 12 years. They aren't fun, but I wouldn't say they are that painful. There are many worse things. The pain of Lyme is far worse!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
I've had 2 EMG's, the first one was supposedly normal but the doctor who was doing it spent the entire time talking about Fibro.
He actually handed me a pamphlet between shocks. Nice huh?
I had gone to this person from a back guy. I have 3 bulging discs.
Anyway, I followed up with my LLMD and he sent me to a different doc.
this one found abnormalitites immediately.
I want to badly to feel well. Sick of looking at my kids with a pained expression.
-------------------- simplify.... Posts: 96 | From Rhode Island | Registered: Jan 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i've had 3. first was positive-and then discounted by regular docs.
2nd and 3rd were so painful i couldn't finish test. it was like being in an electric chair for me. i was hysterical and crying and shaking and kept telling the doc to keep going cuz i needed the results. both docs quit and said they refused to do it cuz it shouldn't hurt me so much-and so i got no results. worthless. just more pain. and money.
i'm sure everyone reacts differently. i wouldn't be surprised if in the future they figure out the ones who can't handle the pain are very neuro lyme...just my thought...i am pretty tuff. handle a lot of pain. this was too much.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
Had an EMG done about a month ago. It showed nothing except for how high my legs would jump when the doc cranked up the juice. These things are not comfortable at all lol. I have mostly nuero symptoms and still everything showed normal on the EMG.
Posts: 45 | From western kentucky | Registered: Oct 2008
| IP: Logged |
posted
I've had two of these done, and both times were suggested by neuros that suspected MS. Came back normal, of course.
I had no idea what I was in for the first time, and told my husband "yeah, sure, just come back with me". He was a little white by the end of it, and stayed outside for the second one. It's very uncomfortable, but the join pain I've had from Lyme is about a million times worse.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
| IP: Logged |
posted
I had one done for carple tunnel of the wrists. Abt 20 yrs ago. Before I knew I had lyme.But right after a bruise like rash, that was dismissed by the drs.
It was so bad for me, I blacked out from the pain. For the carple, they do it in the neck area.
Maybe thats why others say it isn't too bad, theirs was elsewhere ? I know I will never do another one.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic