Hi, I think I have whatever you have, but maybe not as bad. I have done a lot of reading on lupus, and it seems ANA can be positive, then negative, then positive, in the early stages, depending on how retarded your body is being. My ANA was high positive 3 times in a row over 2 years, and I was diagnosed with fibromyalgia. I saw a rheumatologist that ran a bunch of tests for Lupus and RA but came up empty handed. Like you, I have severe endometriosis, irritable bowl (had ischemic colitis once, pseudomembraneous colitis once), irritable bladder, spondylolithesis with pars defect in my back at L5-S1, asthma, weird red flushing on cheeks that get really hot, night sweats, hand tremmors, trouble with fine motor skills, severe depression when I'm in flare, weird red splotchy rash on chest and neck that will appear and be strange enough looking to get comments from anyone around then randomly disappears 20 minutes or so later, red palms of my hands, severe headaches with neck pain, TMJ, thinning hair, tingling and extreme coldness in hands and feet, etc. I also had a severe flare in Nov where I had mild hallucinations and saw flashing lights and blury and cloudy vision. I recently got sick for a week and a half with meningitis like symptoms. They made me get a spinal tap which came back negative. So I wondered if it was an autoimmue attack. ANA came back negative, which really threw me through a loop since it has always been positive, hsCRP came back abnormal high, and sed rate was normal. I have no idea what this is. I am seeing a Neurologist in April to see if it might be MS. I really don't feel that this is just fibromyalgia, and can relate to the frustration of not knowing what is wrong with you. It seems as I get older (27 now, 24 when went to see rheumatologist and first was diagnosed with fibromyalgia) more symptoms emerge. So I am hopeful that eventually there will be enough pieces of the puzzle that someone will be able to put them together to get the whole picture of what is wrong with me. Let me know if they figure out what is wrong with you or if you can give me any advice. I've found that cymbalta and Ultram really helps with the pain. Also mild yoga is some of the best medicine out there. It really does fabulous things for my immune system and pain levels when I do it several times a week. Swimming in warm water also helps a lot, but it is hard to do in winter sometimes. I know it is so hard to make yourself move, but getting out of bed and forcing yourself to be active anytime you possibly can is the best thing you can do for yourself. It also seems like it really helps me with the depression.

Thanks...I really appreciate it.  It's nice actually talking to someone who really knows what it's like and understands...I don't really have that.  Thanks again for all your help.

Karen

Actually I have....that is interesting.  My former PCP Doctor had me on Levaquin & Cipro for a while & I've also had Tequin...Thanks for the tip & I'll definitely check out the site.  I'm trying to stay positive...that's all I can do & take it day by day.

Thanks so much,

Karen

I have most of the symtoms you've discussed.  I've had them for 22 months since taking an antibiotic called levaquin.  There are others in the same family ie: cipro, tequin, avelox etc.  Hve you ever been given any of these?  The side effects are so horrible and include all that you have said.  There is a site called www.fqresearch.org that discusses many aspects fluuroquinolone antibiotics.  check it out.

Definitely find an endocrinologist (a good one).  I had many of the same symptoms and it was discovered I had thyroid problems.  Now that has been removed (and a nasty little bit of cancer in it), I'm still having autoimmune problems but not nearly as bad.  My endo. has been wonderful through all of this and I feel better now than I did 10 years ago.  A good endo. would check for Cushings.  

Worth a bit of cash outlay (my insurance sucks too - you aren't alone).

Will do.  Just had another go around with the PCP today.  His staff is so rude and he's in with another group of Dr's and I guess isn't there but 3 days a week (at this office) and 2 days ago he gave me 2 scripts that weren't covered by insurance, so CVS had to get some sort of authorization from the Dr. and apparently with this office (it was different at my last PCP's office), at this office they just wait til' his next day in to handle it, even if it's an important medicine, which in my opinion is wrong.  At my old PCP's office, if the Dr. who ordered it wasn't there, the lead physician for that day had the nurse pull the chart & either get the required authorization if it had to be that specific brand/dose, if not he would look through the chart, and change the medication/dose appropriately and this was all handled the same day if possible.  I dropped my scripts off at CVS at 3:00 p.m., they faxed my Dr's office at 3:10 p.m. and I still don't have my prescriptions.  They said that he'll be in tomorrow and it will be dealt with then, and just had that attitude like if I had a problem with that, then oh well.  To me it all reverts back to Dr's not wanting to do their jobs.  In so many practices the is NO patient care, it's collect your copay or keep you coming back for miniscule things to get more $$ out of you, and that is all they care about.  It's just so hard to be positive when I'm surrounded by such negativity.  But I really do appreciate all of the information you have given me and your support.  There aren't many people right now that really know what I am going through.  I have a friend who uses the "I know what you must be going through/feeling"...and inside I am like...you have no clue, just to want to be able to sit in something as boring and frustrating as bumper to bumper traffic again to/from work, because at least then I'd be well enough to be working and feel like a normal person again, I yearn for that day.  Thank you for all your help.

Thanks for all your support & suggestions.  My fiance and I have actually been thinking about just laying out the cash to diagnose what is wrong with me, since I think that is the only way #1...I'll get to see a qualifed, good Doctor & also one that will take everything serious and not just throw his hands up in the air and just say..."I don't know...", which actually has happened more than once.  And the Neurologist they sent me to (almost an hour away) was a quack.  After filling out 15 minutes of forms (standard) & in with the nurse for medical history for 30 minutes (so much history), I was in with the Doctor for all of not even a minute and he told me that since I go to pain management, he won't see me as a patient, and to get out of his office & those were his exact words.  After telling this to my fiance (crying), he started to check this Dr. out and come to find out he might not even be licensed in the state of Florida.  And now his license is flagged and they are looking into it & he has had 3 prior complaints against him & also had a DUI that I guess he sued the sheriff's office over & lost bigtime for lying to the judge & was ordered to pay some hefty fine.  I am going to try and find an endocrinologist and probably just pay out of pocket for it.  It's worth it to me.  I just really don't know how to go about finding a "good" one.  I just don't want to end up with another quack, been there done that.  My symptoms have been getting so much worse and it's like I'm not even myself anymore.  I cry at the drop of a hat for no reason and very depressed, as well as not sleeping hardly at all.  I just try and stay positive.  Thanks for all your help (everyone), I really appreciate it.  If you know anything else that might help, let me know.  Thanks again. Karen.

No, I haven't been tested for Cushing's.  I was reading up on that today and I do have many of it's symptoms.  Part of the problem is my insurance.  I have the worst insurance which has limited me to the worst Dr's.  I hate to say it but it's true.  My PCP Dr. doesn't know how to treat me, so he just refers me out, but 1/2 the time I can't even find a specialist that will take my plan and when I do, they are the worst Dr's that shouldn't even be practicing.  I finally found a Rheumatologist, but he looks at me and talks to me for 3-5 minutes, says it's "probably" fibro, tested me for Lupus and it came back negetaive, then said....well it has to be Fibro & walks out of the room.  PCP wanted me to be seen by an Infectuous Disease Dr, appt is next Wed, I have a Neurology appointment at the end of October, but my symptoms keep getting worse in the meantime.  And I don't know if it's connected, but I have the worse sinus infection that is in my ears & chest as well.  I am coughing up this paste like substance and when I blow my nose it's like someone is compressing my head in a vice and I have this splotchy purplish rash on my skin, more noticeable on my legs that looks idential to this picture: http://www.nlm.nih.gov/medlineplus/ency/imagepages/2403.htm which states Dermatomyositis.  Also I have extreme insomnia and cannot sleep.  I finally got some sleep last night after 38 hours of being awake. My depression level is the highest it's ever been and I cry on at least 4-5 times a day uncontrollably.  I just feel as if whatever I have is killing me.

Due to my neck injury, I get bad muscle spasms to where I cannot hardly turn my head (without extreme pain), on top of intense prickly, tingling feeling, numbness, tingling hands...can somehow the inflammation/spasms cause compression of the hypothalamus or brain stem, cause what is going on now?  I have a lot of the symptoms of Cushing's.