symptoms with no answers

[amymj]

Hi...I am 29yrs old I was told by my pain dr I had Fibromyalgia about 2 yrs ago. Since that time I have had several new symptoms that he gives me different explanations for each time I see him. I had my first full seizure about six mos after I was told I had Fibro. We were out of state visiting family my husband rushed me to their local ER. The results of the MRI showed nothing so they said they didn't know. Since that episode I have had body jerks when I am awake and sitting. I also get them much worse as I am falling asleep.They are terrible my whole jumps. I was told I had a mild case of sleep apnea after my sleep study. I was told it was mild so I didn't need anything for it. Then I began to get muscle spasms all over my body and if that isn't bad enough some times if I smile my lips stay in that position for several hours. During this it is hard to speak because my lips won't move to assist in forming words. numbness and tingling in finggers and toes. My eyes burn when I blink  it feels like there is glass under my eyelids. They get red spots. Headaches all the tmeand vision issues....double vision....blurry vision.
Now I have constant nausea which is made worse when I eat.I live off of Pepto. Unexplained weight loss 37lbs in about a two month time frame.The last 5 lbs was lost in two days roughly four days ago. The most recent addition to my symptom list is unexplained hair loss. It comes out in clumps.
  I am in need of some answers or sugestions on what I should do or how to handle my AWESOME situation.

                  Thanks to anyone who can shed some light.
                       Amy

[Dr Rajgopal]

Hi,
The cause of your symptoms could be Seizures, Cluster headaches or SLE . The symptoms of headaches, blurred vision, muscle spasms, hair loss, nausea, weight loss and hair loss are all associated with these conditions. Please take the MRI report and consult a neurologist for the examination and diagnosis. If it was a plain MRI, please go for an MRI with contrast. Hope this helps you. Take care and regards!    

[selmaS]

When u go to the rheumatoid dr get checked for Hashimoto's Thyroiditis as well...also autoimmune condition...which u may have both.....but I feel is more a reason for ur hair falling out. I have Hashimoto's and have tested boarderline for the lupus......nothing deff and it has been over several yrs trying to get a dx.

Research and try to find a Rheumatoid dr that specializes in lupus and or autoimmune conditions u may have better results.

Good luck

"selma"

[ggreg]

Dear Amy,
Oh, I think you may have Lupus.  Your hair loss, feeling of glass in your eyes, seizures, plus the symptoms that led to a previous diagnosis of fibromyalgia, this points to Lupus, specifically Systemic Lupus Erythramatosis (not sure of spell) or SLE.  Here is a great link that tells you everything you need to know about the disease, altho I'm sure there are many more:

http://www.medicinenet.com/systemic_lupus/article.htm

Now, Lupus is hard to diagnose, but there is treatment, which steroid type medicines help a lot.  That wonderful singer Seal, who is married to Heidi Klum from Project Runway, he had a discoid form of Lupus when he was a child, which made the scars he had on his face, but so far that kind is not bothering you.  The seizure part, there is a percentage of Lupus people who do indeed get that kind.  I knew a lovely lady who had Lupus, and I remember she told me she couldn't be outside too much without at least wearing a hat, so she grew a shade garden under some big trees around her house, lots of butterflies as we walked on a path thru there.  So, lots of folks get the disease, but like I said before, it's hard to settle on it as a diagnosis.

So, while your pain doctor thinks it's fibro, I think you should seek out a second opinion from a physician who knows about Lupus, perhaps your general doc can refer you to the right specialist, maybe a rheumatologist, altho it is an autoimmune disease... in any case, I hope you can find out WHAT is causing your hair to come out, becuz if it's Lupus and it's not treated, this would be a dreadful state of affairs for you, since I am a female also and know how important our appearance is to our quality of life.

I hope somebody will peg your condition and pay attention to the big picture of what ALL your symptoms mean as a unit, so you can get some treatment going right away that will help you feel worlds better than you do now.  There is a small chance it's some sort of thyroid or hormonal problem, but with the seizures, I felt Lupus was the better choice.   Best wishes for a good outcome.
GG