i feel for you. i know what it is like to have people telling you that it is fibro etc when you know that something is wrong. i am 35 and up until i had children was very active now everything is a struggle, pain is sometimes unbearable and the worst thing is my kids are the ones who suffer.
what kind of blood tests have you had?? and what specialists are you seeing?
I have had MRI, MRA(2002), NCS(right side neck- arm nerve damage), all rheumatoid blood tests(some sort of + epstein barr & parvo?), elevated esr,back x-rays(2005) slight scoliosis to right, some spurs & ddd. I have seen neuro, pain mngt, rheum, pcp, endo, derm, ophthal several different ones in each field over the years. Recent neuro & pain mgmt think MS, but MRI last week neg for lesions.
Do you know if there is a place to find MS docs in my area??I have looked on MS society & closest to me is 2 hr's away. Kinda hard to get there when I fall asleep drivin, HA.
I've been reading a lot of the postings on this forum & it seems that you would be the person to ask.
Do you know of any relation between empty sella and MS?
Do you where I can get info for a specialist in MS for Spring Hill, FL??
I have been to 2 different Neuro's over past 8 yr's & still have no answers. They say CFS & Fibromyalga, but I just don't buy that. I am 44 yr's old & have felt 80 for past 6-8 years. I just want a definitive answer before I just accept their dx.
Thanx for any help.
Just found this post while searching empty sella - have no idea if you will still read this, but have you been evaluated for sarcoidosis? It is frequently misdiagnosed. The "rash" on your shin is what caught my attention -- the other symptoms are severe fatigue and shortness of breath with exertion. The shortness of breath is because the disease is often located in the lymph nodes in your lungs and they enlarge, reducing your lung capacity for air exchange. Back to the rash - the one connected to sarcoidosis is called erythema nodosum, and is characterized as quarter-sized red rash areas on your shins. I had this back in 1986 -- I had many days I could hardly conceive of taking my head off of the pillow in the morning. It went away with no treatment about 6 months later, but it can linger and is only dormant. It is an autoimmune disorder and can recur in same or different location at any time. I hope yours has gone away. Only about 2% of people with this have continuing problems, so I hope you are in the 98% and are better by now. Good luck.