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Hi everyone, this is my first time posting on this board. I've posted on a couple others (lupus, Fibro, and Lyme) as well because my docs still aren't sure what the heck is wrong with me yet.. it's been able 3.5 years that I've dealt with these problems. I'm a 29 yr old female.

I'm seeing my rheumatologist again Monday (who I LOATHE) to get blood test results, and I would like to be armed with information. I've only seen him once before and he treated me like an idiot and basically told me I was depressed and since I didn't seem to have any evidence of rheumatoid arthritis, that he really couldn't help me!!

Ok here's the story.. I'll warn you, this is going to be long. I have sooo many things going on it's not even funny. If you take the time to read all of this, I thank you tremendously!

Prior to January 2001, I was perfectly fine besides having Mitral Valve Prolapse. I was happy, I was healthy, I was really active. I had no complaints with life at all. Until one day I just started having tons of weakness in my legs. Then the pain hit. I could barely walk, I had a hard time keeping my balance. I was exhausted.. I had bad headaches. Needless to say, things have gone downhill since, with the exception of a couple months where I seemed to be getting better.

I went to the doc (I had moved a few months prior to all of this so this was a new doc) after about a week of this hell. He told me right off the bat that I had Fibromyalgia, but he sent me to a neurologist anyway. He ordered a cat scan of my brain (which showed nothing), and pulled on my arms and legs a bit and tested my reflexes.. sent me home telling me I was fine and that I needed a psychiatrist, not a doctor. Ok THANKS IDIOT. I wasn't depressed at all. I'm STILL not, I'm just ticked off like crazy now.

Ok, go back to regular doc.. nothing else done. Deal with Fibro dx. Doc ends up skipping the country because of Malpractice. Find new doc. New doc says maybe Lupus. ANA test is negative.. so nope can't have Lupus she says.. ok fine.. back to Fibro. But ohhh now she's thinking maybe MS. But since the past ct scan was fine and I wasn't showing any neurological damage, just mostly pain in the muscles and joints, it just couldn't be. Back to Fibro dx again.

Now I have a NEW doc. SHE's awesome, at least she has an awesome bedside manner at least and is willing to whatever it takes to find out what the heck is wrong with me. She sends me to this rheumy that I have to go back to Monday.. he ordered a bunch of blood tests including another ANA to rule out Lupus - which he claims that you cannot possibly have unless the ANA is positive, which I've recently found out is a crock of ****. He also did a couple of Lyme tests because I had been bitten by a tick a few years back.

Now we get to the symptoms.. these are all over the past 3 to 4 years.

Joint pain - no swelling except occasionally in the hands. It's in my elbows, fingers, knees, hips, lower back, ankles, and even toes.

Muscle pain - this is practically everywhere, almost every day, but I have days that it's so bad I can barely move.

Severe fatigue at times - some days I just stay in bed practically all day because it gets so bad and I CAN'T get out of bed without help.

Muscle twitches - I can't go 5 minutes without SOMETHING on my body twitching. I'm talking my tongue, my legs, arms, THE NETHER REGIONS and even INSIDE them (hard to believe but very true.. I can feel them with my finger - no I don't make a habit of this lol). You name it, it's twitched at one point or another. Some of these twitches will last for days, my tongue twitched for over a month.. doc said I probably bit it lol.

Tingly feelings in my left arm. Sometimes in my toes.

Tightening in calf muscles - This is a recent thing.. it came along right when my lower back and hip pain hit.. like umm 4 days ago. They don't feel hard, but it's really hard to straighten them out without pain no matter how often I stretch and walk and whatever else I can do..

Blind spot in right eye - this just happened to be there one day. No pain, no blurriness. It's just annoying.. eye doctor didn't really say what the heck it was even though he found it by and xray type thing w/contrast. Never really thought anything about it really.. but I figured I'd mention it anyway. I don't wear glasses and have good vision.

Weird rashes - which is another reason Lupus is suspected.

Bladder pain - Gyno says most likely Interstitial Cystitis.. always have urgency and crampy pain. Rarely is any infection found, but mild hematuria has shown up a few times.

Dx irritable Bowel Syndrome by gastro specialist.

There's more, but I don't know what WHAT has to do with the other, if at all. I'm at such a loss. Dangit this is SO not me. I want to be active again but my body won't allow it. I've never had an MRI. I've had one of those nerve conduction test things.. and that thing where they put the electrodes on you and shock the heck out of each muscle. All that was found there was that I had mild muscle deterioration that I was told it was from my lack of physical activity. I was told to exercise.. YEH!! Ok I do whenever I can!

I've had numerous blood tests that keep coming back normal.. and a few others that I'll get the results back on Monday. The only ones that have been abnormal was my platelets (they're always low) and I have a fairly high albumin level which I was told was because I was probably dehydrated. I can't tell you how much water I drink each day because I get horrible dehydration headaches if I don't.

I think that about covers it.. I'm SOOOOO sorry this was so long and if you did take the time to read it, I really truly appreciate it. I'm sick and tired of not knowing what the heck is wrong with me and I WANT my life back.

If anyone can give me any insight here.. please do so. I'm at a complete loss.
Thanks :)

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