I'm pretty sure I have Erythromelalgia, for over 15yrs my palms of my hands have been bright red, (not glossy red though) and past few years when it becomes hot and humid they burn and hurt, kills me to close my hand into a fist. Now Ive learned it can be primary just have it alone and that it is the opposite of Raynauds (which my sister does have). Ive read it can be secondary to MS or it can be Hemachromatosis. I know to ask my doctor for the Serum iron test and ferrritin test, maybe the %saturation and TIBC. Is there anything else I should worry about with this Erythromelalgia problem??
Second, I have Fibro (both hips hurt and lower back buttock burns on one side)...but I have MANY MS symptoms that get brushed off as anxiety. Off balance twitches, hands shake off and on, flu like feeling..numbness like feelings (but not numb),once I put my hand in COLD water and had to pull it out because it felt like I was being scalded (happened 7yrs ago and never since) sometimes when Im in the shower the water looks like fire balls. This happens once in awhile.
This has gone on for at least 15yrs with hands and 9yrs with the anxiety/ms like symptoms.
Any thoughts on tests or possibilities for my hands? And what do you make out of the MS like symptoms, or is it just my anxiety disorder (NOTE- I'm hyper sensitive, and I have a REALLY easily startled response).
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
Erythromelalgia is not specific for any disorder, but can be primary or secondary. The secondary forms are associtated with myeloproliferative disorders (for example: polycythemia vera, essential thrombocythemia), systemic lupus erythematosis and rarely multiple sclerosis. You should have a CBC to evaluate your platelet levels. In some cases, aspirin has been helpful for this disorder, when it involves platelet dysfunction.
Multiple sclerosis(MS) can often present with "weird" symptoms and may sometimes be passed off as anxiety. To evaluate for MS you should have an MRI of the brain and C-spine with contrast. A lumbar puncture and visual evoked potential are confirmatory tests that may also be needed. The symptoms you described, balance twitches, shaking hands and flu like feeling are not very concerning for MS, but you will not know until the tests are done.
I hope this has been helpful.
I feel frustrated! My husband was diagnosed with primary progressive ms 2 years ago. The mri showed lesions on the brain..but the spinal tap tests came back showing 2 out of 3 results negative. Mylelin results were up at 8.(positive) He woke up totally paralyzed on his left side. Facial droopiness..speech impaired. A stroke was ruled out. Charlie is 60 years old.He is totally dependant on his wheelchair.
Cellcept was recommended...but he refused after 1 week.
Last week, a second MRI...no changes what so ever. We are meeting with neurologist next week. The only real symptoms prior to this paralysis "awakening" 2 years ago, was stiffnes in the leg and numbness in the face. ( 1 year prior to) In the back of my mind.....I do question the diagnosis. Just wanted to air my frustration and appreciate any comments, ideas,simularities that anyone may have!
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