I have been between diagnosis for several months now. Doctors can’t seem to nail anything down. All the while I keep getting worse. Any insight you could give would be appreciated. I don’t know if it is Lupus, Fibro, MS, Lyme, Sjogren’s or something else…
July 2013- Rash appears and disappears on various parts of body most often on chest and legs. Usually lasts 10 mins or less.
October 2013- Chronic fatigue every day, all the time. Pain in all areas of body. Muscle weakness. Very bad insomnia. Night sweats. Dry patches in middle of hands. Weight loss of about 15 pounds. DX with Fibromyalgia.
November 2013- Muscle twitching in arms and legs. Cognitive issues. Frequent urination and IBS, get cold easily, chest pain.
January 2014- Some loss of sensation in feet and other areas.
February 2014-DX with Optic Neuritis, constant rash on palms of hands, painful hands.
I have had been tested for everything under the sun several times. I believe I was tested for Lupus 3 times now. I’ve had a lumbar puncture which was clean, tested for parasites, had my heavy metals checked, I was tested for allergies, and I had a brain and upper neck MRI done. The brain MRI did show an abnormality but the MS doc says it’s no MS.
Things that don’t happen: I do not have an adverse reaction to the sun as far as I can tell. I live in sunny south Florida so it’s pretty much summer all the time here. I do not get cold or flu like symptoms. I did for about 2 weeks in January but everyone I lived with had the same ailment so I don’t think it was related. One of the few places my rash doesn’t show up is on my face. Very rarely it will lightly appear near my hairline. I have not noticed any hair loss but my hair seems drier.
There are other symptoms I am sure I am forgetting here.. The strange thing is some symptoms have come and gone sine onset while others are constant. The fatigue, pain, rash and vision problems being the constant ones. It sometimes feels like my whole body is attacking itself. Other times It feels like whatever is wrong with me decides to pick on a certain area for a week or 2 then move on to another part of my body. The rash has been getting worse but I am coming off of Prednisone for the optic neuritis so maybe it’s a side effect.
I just don’t know what to do anymore. I have yet another appt with yet another doctor this Monday. This will be number 15 I think…
Any insight you might have would be appreciated. I feel like I’m going crazy here. Sorry for the long post.