Testing in the US for issues with neurotranmitters- problems with nerves/muscles firing

[Skitrees]

I posted earlier but have not had any answers to my posts-What further testing can I have??  For past 3 months I have been suffering the following-main symptoms seem to be pain in muscles (and occasionally joints) in arms and legs combined with all manner of weird sensory feelings pins and needles, numbness, muscles feeling like they have had Chinese Burn (swollen and tingling). This started in my arms and hands with severe pins and needles and joint pain (thought being  a jewellery design student had aggravated hands) but after a couple of weeks progressed to my legs and then a fews weeks later started getting weird sensory feelings on my face and neck.with feelings like sparking, numbness and tingling increasing on both sides of my face  and I have a numb feeling across the front of my throat nearly all of the time under my chin.  Then about 2 weeks ago my forehead became numb and this has not discipated.  Occcasionally the chinese burn feeling comes across the front of my throat which is very scary as i feel like my throat is being really constrictedand I find it takes effort to swallow when this happens  .
I occasionally feel like I have torn a muscle- eg my bicep, I can get pain in my arm or leg that appears to be following a nerve or artery. I have noticed some swelling in my arms- eg muscles,I have also noticed  the pads below my thumbs (palm up) can  swell and become blue with veins standing out- with tingling in my thumbs when this happens.  One of the above symptoms is with me nearly all of the time and has severely impacted on my life. I find that it is much worse at night and that exercise makes it even worse. I feel like my muscles/nerves are over firing.
I have had an MRI with gad and all manner of blood tests- all clear.  2 NCVs and 1 EMG were also clear.  My Rheumotologist told me today he doesn't know what is wrong with me and is basically using drugs as elimination ( have been on Mirtazon?? and Doxepin) and have just started Lyrica today. My Neurologist (who put me first on Mirtazon and then Doxepin) told me he cannot find anything neurologically wrong with me and is clasping at straws with fibromyalgia (which Rheumo says I don't have so have stopped taking Neuros meds.)
I live in Australia and my Rheumo told me that diagnositically between him and the Neuro they had exhausted all optionse. We discussed neuro transmitter issues and he told me  that there are no diagnostic tools available here (in Australia) for this (but they do have them in the US). What type of tests are these and any idea how much it would cost a non US citizen?? Also, is there merit in me having CSV or muscle/nerve testing as these have not been done. Any ideas on what the problem could be?? Does a normal EMG/NCV rule out an issue with nerves/muscles.
I am in my early 40's and am normally in great health and am in great mental health (aside from trying to work out what is wrong with me).  Desperately need help to get my life back on track!! Any suggestions/ideas would be most welcome.

[cathyr27]

Hi Skitrees,
I have just been reading your posts of June 2011 - (with ggreg) and the background.......did you ever get a diagnosis from your Doctors?

If not... ask them about Erythromelalgia?

I have similar symptoms following neuropathic pain and was fortunately was quickly diagnosed within a few weeks.

Erythromelalgia is a very rare condition (I have found out and only 1 in every 250,000 people get it - or as i was told there are about 80 of us in Australia  ).

It would be interesting to hear how you have gotten on with Lyrica - as this is the drug they use to treat it my Associate Professor told me.

Regards,
Cathy R
Branxton NSW Australia

[ggreg]

I don't know how quickly or well Lyrica works for peripheral neuropathy, you might need some much sturdier medications, but for me, my back pain was very sharp and had gone on for a couple years, and I took the drug a little before bedtime, and when I woke up, I was pain-free for the first time in all those months and months.  So, it doesn't take any time to work.  Part of taking Lyrica is it has to be increased three- or four-fold within the first month, until a plateau of comfort is reached, and the prescribing doctor should know this.  I take it three times a day, and after the initial big increases in dose, I've only had to up it twice in the last four years or so.  I have heard of the cymbalta you're referring to, they tried to get me to take it, but I felt my drug combinations were good enough and didn't want to fool with it any longer (I've been dealing with my health issues for a very long time).  But that's an additional type medication PN folks try... you can take several meds if you need to.   I would look into the soldering you did, even tho it was for a short while, as being a possible cause, an allergist would be the one, or a toxin-type specialist could do a blood screen for metals in your body.  But I see what you mean, looks like once you got away from it, your symptoms would have gone away too, but only the docs would know for sure.  

[Skitrees]

Thanks for your response to my post.  I am still taking Lyrica although only early days so will see if it makes a difference-how long does it take before you feel relief from symptoms if this is going to work.  If that doesn't work the rheumatologist wants  me to try cymbalta. Have also been on prendisilone but have stopped now as it did nothing. Hopefully one of these will make a difference.  I have been tested for all that you mentioned but all clear.
I hadn't associated my jewellery course with my symptoms as I feel I wasnt exposed enough- I was studying part time and as it was the start of the course we were just cutting and soldering- I had to stop the course  pretty much strait away due to the symptoms in my arms and hands.
Am hoping Im going to wake up and all problems are gone.  If they persist I will follow up on the testing in the US and clarify with my rheumotologist as to what it is- as I said earlier- i think they can identify if there is an issue with neurotransmitters- and it might have something to do with adrenal (gland???) as my husband is going to the states in September  i could pursue it then.

[ggreg]

I think you should look again at your jewelry design situation and consider a possible allergy to perhaps one of the glues or fumes from burning metal, that sort of thing, an allergist can assist you with this.  Also, toxin exposure can cause the next type of disease.

You sound like your problem may be peripheral neuropathy.  Your symptoms match up very well, and the medicine Lyrica you were given, I take it, and it should actually provide you with some relief, so please think about resuming the drug.  It is given to people with neuropathy.  Other things that help neuropathy are B vitamin complex and vitamin E.  Neuropathy can be the result of a wide variety of illnesses, so as long as you have been tested for diabetes, hypothyroid, certain viral and bacterial infections like shingles, autoimmune diseases like lupus, then you will know it's not secondary to something a little more problematic.

I'm not sure what other tests the U.S. has that Australia does not, ask the docs, and then you can research cost and so forth.  As for fibromyalgia, if you do have that, again the Lyrica will help you feel better for it.  But I think I'd revisit the allergy idea, and then settle on peripheral neuropathy, which toxin allergy can cause it.  I don't know why your neurologist hasn't focused on that, but you could get a second opinion if he thinks you don't have it.  The Mayo Clinic website has a good description of it.  Hope these ideas help you out.