Big Day Tomorrow

My neurology appointment is tomorrow! Woo hoo! The vascular surgeon who diagnosed me says he’s very knowledgeable about EM, so hopefully it is worth the three month wait for an appointment… Can anyone tell me what kinds of tests neurologists order? I’ve had NCSs, but maybe a skin biopsy is in order?

I am so happy for you Nola Sue! You may have been there already depending on your time there. He may do a nerve conduction study or an autonomic nerve study but probably not today. Please let us know how it goes today.

Take care,


How was your visit with the Dr?

Sorry for not updating earlier. I’ve had a couple of 15-hour days at the office since the appointment. It went well. The doctor was fantastic - a good listener, not rushed, and good at explaining things (he should be since he is the neurology director at LSU). He has seen EM before. He confirmed my EM diagnosis but saw a few holes in the bloodwork that I’ve had so far, so he ordered additional tests - vitamin levels, Sjogren’s panel, and some others. He was going to order genetic testing, but was happy to head that I’d already submitted a sample for the Xenon study. Apparently, it can be a bear to get genetic testing approved by the insurance company. He didn’t think a skin biopsy was necessary since none of the clinical tests for small fiber neuropathy showed any sign of it. He said I should continue the aspirin, though he also said more than 81 mg per day likely would not make a difference. He wrote me a prescription for carbamazepine/tegretol, which he explained is an old seizure medicine that acts as a sodium channel blocker and has been shown to relieve EM symptoms in some patients. I have taken two doses of the new med and have not noticed any relief yet, but here’s hoping…

Dear Nola Sue,

Do you have any side effects from the tegretol? I have been offered to take it and neurotin. The neurotin - just 100 mgs made me stoned for 5 hours so it is not an option. Do you notice any edema or water retention or any weird thigns from the tegretol? On a scale of 1-10 what level is your pain and do you have constant pain and if not - how far apart are your flares?

Ii have a lot of pain - it was worse and it is 24/7 but I am very resistent to the meds- I have to work and i am afraid of any medicine that will mess with my brain and my ability to think straight- and function at work.



Hi Nola Sue

Thanks for the update. I have been thinking about you.


Hi Jordy,
I took the tegretol only for a couple of days, and then the weekend happened. I’m restarting this evening. The only difference I noticed during those two days was that I was noticeably sleepier/quite draggy feeling. I knew that was a likely side effect, so I reluctantly started it last week while things were hectic at work. I had a pretty bad flare the first night with burning and heat in the soles of my feet and just heat and redness in my hands, and then a diminished version of the same the second night. In response to your other questions, I am on the more mild end of the EM spectrum. I do not have constant flares. Rather, I flare almost every evening in varying degrees. Sometimes it’s just heat and redness in my hands. Sometimes there is strong pain in my hands and forearms (not burning or stabbing - just pain). My feet often get red and hot, but only over the past few weeks have they started burning. I get some relief from aspirin, and I notice a difference when I forget to take it.
I’ll let you know how the tegretol works out now things have settled down and I will be dutifully taking it daily.
Good luck with your treatment. I know that most meds take some getting used to. I hope that the neurontin becomes more tolerable for you and brings you some relief.

It sounds like it went well Nola sue. He sounds quite knowledgeable. I like the fact he actually went through your past blood tests and didn't just take past doctors opinions that it's all good without looking himself. I think sometimes if I could just get a doctor to seriously sit down with all of my past blood work and look at it like a puzzle there just might be something there.

There are plenty of things in my blood work that are abnormal but they just say they aren't that abnormal or it doesn't really matter any way. Maybe if someone actually looked at all of them and over time as some are abnormal then return to normal just to be abnormal again! Different doctors ordering different things looking for different things. I need someone to look at them not looking for something in particular but just looking at what the big picture shows. I know probably too much to ask and it very well come to nothing anyway. sometimes I can't help but wonder though.

It sounds as if you are in good hands there. I am so happy for you. Please let us know how this new treatment works for you and try not to work so hard :)

Take care,