Heat before NCV/EMG
 

I did not want to hijack the other thread, but I am curious. Was anyone else placed under a heat lamp prior to their EMG/NCS ?
At Johns Hopkins they did this and it took almost a hour before they thought I was warm enough to proceed. Now I should explain that I have CMT and am always cold. I was very, very cold in the hospital that day, although it was June. There was no expectation of a normal EMG as I had already been diagnosed with hereditary neuropathy and was there for a second opinion. I had a skin biopsy on a subsequent visit, final diagnosis large and small fiber neuropathies with muscle loss, and pinched nerves. Probable CMT type 2. Tested negative for HNPP.

Glenn's response in the earlier thread would seem to indicate that cold conditions are preferred for the test. Anyone else get the old French fry treatment?

They never used a heat lamp or anything like that for me. I know that Glenn mentions cooling vests, etc. for someone with MS. But, everything I have read and heard from other people who have CMT say that we should be warm first. Again, this is for someone who is suppected of having CMT. For MS and other things like spinal issues, etc. like ohaya it might be very different. I guess the debate goes on and on.

Didn't have a heat lamp, had warm towels wrapped around my legs. Felt good, sticks didn't hurt as much.

Neuropathic pain can be strange.

RSD neuropathy can't stand cold. The posters on that forum all do heat.

However, on PN, and for myself, I find cool temps better for me.
This is just a sensory thing. I use icepacks frequently on my back too, and knees when needed. My chiro told me not to do any heat for more than 10minutes or so, or pain would be worse.

When having an EMG however, doctors will do what they want.
I had an EMG in my right arm... no preparation of any kind. After the exam for my hands (carpal tunnel), the doctor just did the EMG right there.
The machine was on her exam desk. I was tested on my worse arm, in 5 places, from the base of the thumb up. I don't recall it being warm or cold that day. I was too focused on my problem, I guess. It didn't really hurt, but then I was a mess anyway and wouldn't have noticed. I was at 80% loss by then.:rolleyes:

CMTers have cold hands, arms, legs and feet to begin with. CMT and symptoms of it are not the same as other diseases. #6

http://www.cmtausa.org/index.php?opt...15&Itemid=50#6

I had both an EMG and NCV and it wasn't fun. :( It got to be pretty bad. It doesn't bother some CMTers though. Probably due to who does the test, etc. and what type of CMT you have.

When I had my 2nd NCV, the room was so cold and I felt cold (well, I always feel cold anyway when everybody else is feeling warm). The nurse wrapped my legs with warm compress saying that it should "condition" my nerves. I did not ask if that was relevant to the test or if she was j ust being nice to make me feel comfortable.

Great question!

I have had these tests, repeatedly, over the past 30 years.
Most times, if the room was cold or cool, the clinician had trouble with the testing and had to call in a supervisor, etc. They had decided the difficulties had to do with the room temp (ambient air temp) and their machinery. :confused:

Other times, the room is warm.

I have found a Board Certified Neurologist, also certified in doing all of this type of testing. At the local teaching hospital, technicians do the testing under the license of a certified physician. Now I have the Neurologist, himself, do the testing, as he has a better idea of what he is looking for.

It appears, by using a heat lamp, they did want your body warm upon testing in this case. :) I am sure they were using that method on purpose with you.

I don't do well with heat or with cold. Either one gets me into serious troubles.

I hope you gather some helpful information from your testing.:)
DejaVu

I have had two tests done, one by the head of Neurological testing at our local major hospital, the second by a specialist at Johns Hopkins. Both said there is nothing to be gained by further testing, my neuro went so far as to say she would be taking my money under false pretenses- there is no treatment and they expect the results to show deterioration since I have CMT.

I know that some people with CMT continue to be closely observed by their doctors, but these two stand at the top of their specialty in neuromuscular medicine and I am just as happy not to be seeing anyone other than my PCP. I was hurt at first by what I perceived as rejection, but what they said was true.

CMT makes one particulately susceptible to cold, so that may have something to do with the heat lamp.

I don't see any doctor either unless it is necessary. I am perfectly healthy except for CMT and it is doing a number on me now. I just deal with the symptoms. Saw a podiatrist a year and a half ago in order to get a prescription for AFO's. Had to have the prescription or Medicare wouldn't pay for them. Then to the orthotist who knew what I needed to try anyway but you have to have that prescription. :( I knew perfectly well that it was time to get AFO's without "anyone" telling me that.

We started with the least supportive as you lose good muscle when wearing AFO's. The ones I have give me ankle movement and they fit right into my shoes that I've been wearing for years. I still use a cane, no surprise, and an arm as well. Around the house I am fine without the cane or anything else. At some point I suppose I will need casted AFO's and then the wide shoes and all the fun that goes with them as the AfO's have to fit perfectly for someone with CMT.

Thanks for this! I have been wondering who prescribes the AFO's as that scraping, dragging sound when I walk is getting worse! (as is the pain and weakness. I just don't have the lift muscles in my thighs like I used to)

Catherine, my heart sunk a bit, wondering what this must have felt like to you.:hug:

It's tough. We don't want doctors to "give up" on us, or to see us as "hopeless." At the same time, we don't want them misleading us and/or involving us in attempts that may harm us in some way, in an effort (on their part) to try to find something that helps us.

I can relate. I have seen researchers in various specialties, have seen so many different doctors, had even become subjected to some very unethical research methods (without my knowledge/consent and I will not/have not ever named this researcher in a forum). Many stories after 30 years of trying to find medical help. While most physicians are truly motivated to help, some are motivated to get a paper published more than helping an individual, etc.
It can get messy! :(

I often "beg" my Primary Care doctor to please not send me for more consults and work-ups at this point in my life. I tell him it's fine for him to chart that I have refused, as he has to cover himself legally. I will do a few consults in the near future; yet, I have put them off for a few years. I have been told, by some of the best, repeatedly, that allopathic medicine is very limited in what it can offer me. Their best approaches were draining me of what little energy I'd had. The approaches were crippling my life even more. I am thankful for all of the doctors whom have sincerely tried to help over the years; yet, so little has been helpful. I use the few things which have been helpful and move on, trying to have a life as best I can.

Although it can feel like doctors are "rejecting" and/or "giving up," there's some comfort in knowing they will not use you for their own experimentation, they will put you through unnecessary testing/treatments, will not mislead you or misguide you. They are truly looking out for you, although it can be difficult to see this immediately. They will be there to offer assistance when they are aware of any new approaches which may help. That's truly the most we can ask.
(When we, and/or the doctors, look for more than this, we sometimes open up doors to experiences which truly are not helpful.)

I love your posts, they are so full of heart!
I am glad Kitt is here with her knowledge, her experience, her compassion and her encouragement!

I encourage you to continue to make the most of life!
We are not our illnesses, our diseases. We are each so much more than those things!

You have an amazing heart and spirit! :)
May you be surrounded with lots of Love, Hope, Support and Joy!:grouphug:
DejaVu