Finally diagnosed by a Neurologist in Indiana

I drove 3 1/2 hours to visit a Neurologist after waiting 6 months for the appointment. I tried not to get my hopes up and ran over in my mind what I would say to him cause you know they don’t like you doing your own diagnosing but I told him I heard of him through the EM forum and it went from there. I showed him the picture of my feet when they are filled with blood and he said that “cinched” it for him. That surprised me cause I assumed it was the red feet he was needing to see but my feet burn on the soles and toes. He did explain that some cases of EM are more chronic and insidious and that some cases are more acute. He said that he doubted that anything could help me much since I have had this so long but he would try. He congratulated me on figuring out my own diagnosis. He was great, really. He’s one of those doctors that really wanted to be a doctor for the right reasons. He also said Dermatologists should be more aware of the disease because it’s a skin condition.

It’s great to know that there is ONE doctor in Indiana that knows his stuff.

Good for you! It seems like most of those diagnosed did their own research first. I saw my neurologist today and he was not really that familiar with EM but after showing him the pictures he provided me with options and gave me choices so like you, I was pleasantly surprised. I am getting pretty good help from a dermatologist also.

Hey Farmgirl…I told him it didn’t seem to be a rare condition, as there were plenty of us on the web but he says he gets 2 or 3 new cases a year. And I’m glad your neurologist was good too, they are rare. I was sent to the neuro by the pain mgmt doctor so that I could have Small Fiber Neuropathy testing but this Neuro doctor said it was not necessary, I definitely had Erythromelalgia.
My primary had previoiusly said I couldn’t possibly have Erythromelalgia but I talked her into sending me to Pain Mgmt, because I was at the end of my options. And now my 20 year old daughter will not have to suffer without a diagnosis if she gets it, which I worry about.

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That’s interesting…my doctor also said testing for small fiber neuropathy was unnecessary but he would order it if I wanted to go that direction. Evidently the treatment I’m already receiving for a neuropathic type of muscle pain and movement is the same protocol for SFN.

I have the same symptoms as you. Was diagnosed about 2 years ago after many years and doctors. I have been rubbing doterra essentials oils ,frankincense and myth 2 times a day and have found huge relief from it. Also staying away from all food and supplements that are vasildialtor.

Hi Joan. You had said you use frankincense and myth. What is myth?

It has really helped. I recommend Doterra brand because I trust their pureity and quality

Sorry for typo. Mytr not myth

Like in the bible. Baby Jesus story

I see I have another typo. Myhr