Some lupus-like symptoms but is it?

[snowda]

I am a 61 year old female who has suffered from a mysterious set of symptoms for about 20 years.  I have been to countless doctors and had every test, but no one can diagnose what is going on with me. I have "flare-ups" that can last between a day, or at my worst, a month.  
  These symptoms begin with severe total body soreness, some numbness in my face, my insides feel swollen but there is no indication of swelling in my appearance. My skin becomes so sensitive I can feel the folicles of my eyelashes--and they hurt.  I feel poisoned. Everything in my neck area feels tight. It just feels like I am toxic and going to die.  I have been rushed to the hospital on several occasions but they can do nothing for me. This has gotten worse over the years and occurs more often than before.  I recently had my kidney out for what they say was a condition I was born with --an obstructed ureter that caused my kidney to fail.  While in the hospital I had a mild stroke from which I feel fully recovered. I also suffer from shingles.  I break out with them when I have flare-ups and sometimesget them on both sides of my body. The only thing that seems to help at all, is taking Zanex, which I found out by accident. I have toyed with the idea of this being Lupus, but my doctors have not felt the same way.  I don't know what else to do.  I feel desperate and no one can help me.  Does anyone have any suggestions?

[amythist2779]

After reading that the first thing that came to my mind was fibromyalgia or an autoimmune symptom too. Like hityty said. The reason I say that is because I have fibro and thats how I feel most of the time. Very weak, sore, and achy. Actually the pain I feel is extreme. For those doctors who say FMS is not progressive are nuts. I was not in this bad of shape 4 years ago when I was diagnosed. I hardly needed any pain meds, but now I have to take them daily or else I can not get out of bed to get my kids ready for school. Although I also have a few other things wrong with me such as the FMS, chronic fatige, irritable bowel, arnold chiari malformation I, cushings disease, and bipolar. Geez is that it?? Probably not, I havent had much sleep so I have the brain fog bad this morning.

So here I am rambling on and on, but like I said I agree with hityty, you need to see a rhumatologist (sp?)

oh yea I knew I was forgetting something, I also have a pituitary tumor....Yay...what fun huh?

[bweb]

ok, let us know what happens.  Everyone can learn from you.

[snowda]

Wow.  Thank you both for your information.  I had never heard of MP.  I'll definitely look into it.  At this point I have nothing to lose.  I'll keep you posted on how it goes.  Thanks again.

[Hityty]

Boy do we understand what you are going through. First.... You're not alone!
Your symptoms do sound like an autoimmune disease, such as Lupus, Lyme, FMS, CFS/CFIDS, thyroid, & others, Poisoning (as suggested) is something to look into as well. I've been dealing with FMS/CFS, Mercury/Lead poisoning, MCS, and a few other annoyances for 18+ years, possibly my whole life. (I'm 38) I suspected Lupus, Lyme & MS, but tests say otherwise. Well tests can be & are often wrong! I highly recommend looking into the Marshall Protocol (MP), a curative therapy for people with autoimmune diseases/symptoms, you don't have to have an actual diagnosis, in fact the MP has hundreds of members who searched for years for help and always told they were fine. Here are some good links to check into for starters:
"What is the Marshall Protocol": http://www.marshallprotocol.com/forum2/4213.html

Then on their main page: marshallprotocol.com, look up the many different articles under the headings: "Essential Information about the MP" & "Marshall Protocol FAQ's"

This link discusses: hypervitaminosis-D, and its long list of symptoms (which included everything you mentioned.)
http://www.marshallprotocol.com/forum2/2588.html

I've been on the MP for 5 months, its not easy, it's long term, but it had a HIGH success rate, its proven refutable science, not just a miracle cure we've all tried before, IMO it is so worth looking into. Hope this helps! Let us know.

[bweb]

Hmmmm, maybe the keyword here is "I feel poisoned"...it just might be that you may be having food allergic sensitivity reactions...not like having a full blown allergy, but if you are constantly exposed to foods or substances your body can't tolerate, it can generate feelings of swelling, headache, near fainting...other things you say are happening to you.

Have you ever been tested for food sensitivities?  I know that sugars and yeasts are the most common sensititivies that affect people.  They are hard to give up, but you might try it.

Good luck in your quest.  There is certainly something there...but definitely check into your diet.