Notes from Doc Appointment

I posted several months ago describing my situation which seemed to involve a post viral condition with an erythromelalgia type syndrome. I had a checkup with my neuro today to discuss my progress and symptoms. I am not sure if this will help anyone but there are a few random things I took away from our conversation that I figured I would share:

  • Depending on the onset, “Idiopathic” cases tend to have a good prognosis in that symptoms will stabilize or improve (even resolve over time); he’s seen cases take weeks, months, even years.
  • Genetic testing for adult sporadic onset cases generally isn’t a useful indicator
  • Patients tend to have a predisposition and an environmental trigger
  • Punch biopsy testing doesn't generally provide useful results for tracking progress on the condition
  • If people can tolerate the medications (i.e. Lyrica) then generally should be taken as it may settle the nerves in the long run

Those are my main takeaways. I’ve been dealing with symptoms for approximately 11 months. My constitution has generally improved; however, I still have EM symptoms. I will say my feet no longer get absolutely freezing for no reason and the unusual stabbing sensations and tingling are dissipating. I still have hot flushing and swelling symptoms which are disruptive. All that being said I am staying optimistic and hoping for continued improvement.

Thanks for that Dapper425. Made me smile.
I know that it won’t apply to everyone and there are many who are struggling with multiple conditions, EM being only one part of their problems, but for many of us what your neurologist says makes sense. I saw my neurologist yesterday and the message was very similar.
My first two years with EM were a disaster but with the help of a little medication it is liveable with now. The adjustments I had to make to my life took a lot of coming to terms with but I am done mourning my old life and concentrate on making the best of what has been thrown at me. I do admit though that I am a great deal older than most members and wonder whether I would have been so accepting had I still had a family to bring up or a career to pursue or both.

Yes. The statements he made probably do apply to some EM sufferers but as Nel pointed out it depends on the cause of your EM and associated conditions. It is great information.thank you for sharing it.
Take care,

Yes. One thing I think I've really learned is that treatment/management/prognosis really depends on the underlying cause, which absent one, can be a frustration for patients. Interestingly, most of the doctors I've seen which include a podiatrist, rheumatologigst, and dermatologist all have responded with "take an aspirin" or stated anti-inflammatory medications usually work well. I was a little surprised that they have all heard and seen the condition and that they all responded with the same treatment. Clearly the patient community here can attest that there is no one-size fits all treatment which speaks to the general lack of knowledge of the condition. However, this has led me to believe it's not quite as rare as one might think, but I recognize this is still a fairly speculative statement on my behalf.

Dear Dapper,

MY "EM" also started in July 2013 - in 15 days it will be a year ago. I also have no "real" underlying cause- except I had a raging eating disorder which left me with chronic low sodium for over 6 years. One doc thinks that the low sodium danaged my sodium voltage channels. I have had some modest improvement - over the last two months - once my sodium reached normal range in March.

Your post gives me some hope- and this week I have been very down as I approach my one-year anniversary. I tried very hard to recover from the ED. I went from near 75 pounds to 105 now and everything would be "great' if only my feet (mostly my toes) would stop this endless burning.

I find that taking a warm bath actually makes the toes feel better- I am going to tell that to my new doc tomorrow. The bath used to set off flares. Now when I am in the tub, my toes don't even get red. But when I get out and stand on them, then they fill a bit with blood - and they hurt once I put on the fleece slipppers.

When I wake up in the morning, my toes just feel stiff- i have no redness and no burning. In fact the soles of my feet are blue the way they were for 2008-2012. So I may have a form of Raynauds and EM. But then again when you have anorexia, you lose the ability to regulate your body temperature which is part of what EM is anyway.

You give me hope


Thanks Dapper. And Jordy, like you mentioned about anorexia, people with POTS (like me) often have temperature dysregulation problems too.