Back after a hiatus with updates

Hello everyone.

In May I was told they suspected EM. In July I was told I didn't have it, I had taken a break from the group after I was told I did not have EM.

Saw a neurologist early July, tons of bloodwork, had 3 MRI's, and was told they suspected MS. Went to MS Specialist on 9/26, after about 7 long weeks of thinking I had MS, and was told I don't have MS, Fast forward to this past week, a really bad flare at work, crying at work and at the doctors office, discussion between my primary and the specialist in Boston, and I have been diagnosed with EM. OY!

Not all that surprised by it and glad I knew something about it from researching and joining this group back in May. Also have Raynauds and Generalised essential telangiectasia. My primary has increased my Nortriptyline as it hasn't been working as well the past couple of weeks, and also increased my Paxil. The past 2 weeks has been almost as bad as when this all started. Lots of pain and it is over most of my body... feet, legs, arms, hands, face....even my ears flare. Thankfully I have a ton of support at home and at work.

Next up will be a visit to a Hematologist, just waiting to get the info on when it is scheduled for.Can anyone tell me what to expect at this visit? Just the word Hematologist scares me since I hate even having blood taken, I know it is necessary, I just want to be mentally prepared.


Thank you Tizzy. You're right...........I will try to remember the pain of the EM and that way the needles hopefully won't be so bad! :)

I think they will just do bloodwork...they just want to be sure that the EM isn't secondary to something. I am sorry for your sure sucks, doesn't it? What a crazy back and forth with the diagnosis!

Thanks everyone :) Yes, I will continue to check in here for sure. While I wish none of us were dealing with this, it is a comfort to know there are people that truly understand the pain of this disease.