Lupus? MS? Fibromyalgia only? Help

I feel like I'm at the end of my rope. I've been sick to the point of finally going to the doctor since June 2008. I went to my GP and after discribing my symptoms to her she sent me for some bloodwork. I got a phone call a few days later telling me I needed to see a rheumatologist immediately and that she thought I had RA and Lupus. Alrighty then.
My symptoms are a bit confusing: symetric joint pain(ankles, wrists, shoulders, elbows, feet, hands, hips), full body aches, extreme fatigue, skin painful to the touch, hair falling out (even though I've been on my thyroid meds since 2002), always cold, feet/hands ache all the time & often swell, numbness in arms/legs/feet/hands, persistant migraine type headache, severe brain fog, cold spots on face, dizziness,bronchitis 5 times in 2 years, bloatedness, kidney pain, muscle spasms.
My ANA came back positive but I"m unaware of the numbers. The rheumatologist sent me for more bloodwork but after listening to my symptoms and poking around on my trigger points, he diagnosed me with fibromyalgia. My lupus tests came back negative but the ANA was again positive. I was then told the rheumatologist couldn't treat my fibromyalgia and to take motrin. Ooookay!
I was still miserable but dealt with it until December 2008 when I began losing the ability to walk and talk, had full sides of my body go numb, the dizziness was awful (even when sitting or lying down), I had trouble concentrating on simple things like having a simple conversation with someone or typing on my computer, and the pain started getting unbearable. I made an appointment with a new rheumatologist in January 2009 in the same office and told him of the new symptoms. He began a new treatment plan for my fibro which was awesome and sent me to a neurologist due to suspecting I had MS. He ran all the necessary blood work and the MS test came back negative, as did the Lupus tests but the ANA was again positive. He told me that there is some sort of auto immune issue but he's not possitive which it is. He's suspecting Lupus though. The neurologist did his tests in his office (standing on one foot, balancing with your eyes closed, etc) which I failed. He told me I had a "neurological condition of unknow origin" but sent me back to my rheumatologist without trying to figure out what is going on. He did order an MRI without contrast dye which showed no leisons on my brain but did show disk degeneration in my neck. So again I was back to square one.
My rheumatologist spent the next year trying to find a med combo for my fibro. We think we've found one but then a new fun developed. I got what I thought was a migraine on October 30, 2009 that lasted for 40 days. During that 40 days of fun I ended up in the ER 5 times in so much pain I was unable to function and on 2 occasions I lost the ability to talk and the use of one leg. I ended up in my doctors office 4 times being sent to an infusion center for medication infusions. I was sent for a CT scan which showed mastoiditis which was treated with antibiotics. The pain was still there. I was again sent to the neurologist who diagnosed occipital neuralgia and sent me to a pain specialist who has been doing injections into my head. Not fun and only the first one worked. The headache has not fully gone away and I'm in constant pain.
Over the last year I've developed new symptoms: sores in my mouth, swelling of my abdominal cavity (feels almost like its bruised on the inside) and I'm getting dizzy when I move my eyes even slightly.
My sister in law has Lupus and when I describe what is going on she says it sounds to her like what she's dealing with.
I'm so frustrated. I just want to know what is wrong with me. I feel like I'm going nuts. I don't know if I should try a new rheumatologist or just learn to live with what is going on. Any suggestions would be helpful.  
Thanks.

[Joni686]

Hi Ktorrice,

My first suggestion is forget just learning to live with this.  You obviously have to adjust your life to what's going on with your body but if you are asking me, never give up.  It took me 8 months to be diagnosed with lupus.  I know that sounds pretty quick but I just happen to have all the symptoms right down to the malor rash.  BTW it didn't fel fast to me.  I went through several doctors and wrong diagnosis and medications that put me in the hospital and ER etc etc.  I can tell you that I miss the way my life used to be every single day and have hope every single day things will get  to a point I can be a little more active.

All of the symptoms you have listed I feel like I have had at some point except one whole side of my body going numb.  I will tell you that some antibiotics can make your symptoms worsen so you might just want to keep an eye on what your doctors give you.  Penicillin is one that is known to make lupus symptoms worse, also some heart medications and hormone replacements or birth control.  You mentioned being on thyroid medicine.  You have a positive ANA.  Have you been checked for Graves Disease?  Or Hashimoto's?  Just a thought.  Has anyone ever told you that extreme use of ibuprofen with lupus can cause migraines?  Do you take a lot?  I think you mentioned it.  If you take an NSAID it is different from Ibuprofen.  If you want I can find an old article I read about what Ibuprofen does if taking it a lot for lupus pain.  I would have to search through my computer but let me know if that applies and I will find it.

It sometimes take a loooong time to get diagnosed.  I was trold at first I had a connective tissue disease of unknown something or another.  See, I am having brain fog.  OMG I had it so bad one Christmas, we were all sitting around playing UNO and I could not even put a sentence together.  I was so upset I just cried.  Now I have learned to laugh at myself and let other people feel comfortable laughing with me.

God Bless,
Joni

[TrudieC]

Joni, I am very interested in that ibuprofen and Lupus migrain connection.  In the last few weeks I have been having a heck of a lot of migraines after so long without them.  With m plaquenil I am also taking ibuprofen around the clock.

[Joni686]

Hey girl,

I will send you two articles I came across last week, very interesting.  I think I will have to copy and paste in two messages.  Here's one:

http://www.emedicinehealth.com/lupus_systemic_lupus_erythematosus/page7_em.htm

[Joni686]

Here's the other:

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=85&zoneid=17

I found this very interesting.
Let me know what you think.  I take cellebrex daily instead of Ibu.

Joni

[karajo]

I too have experienced all of the same symptoms except the going numb on a whoe side of the body.  Before medicine, I was so dizzy I couldn't walk down our hall w/o bumping into the wall the whole way down.  

I too had a difficult time getting dxed.  Then I read on a medhelp post to spend time in the sun prior to my ANA being tested.  It jumped from 640 to 2,560.  And that's what I needed.  All of the other test were negative.  I also switched drs.  I feel lupus is progressive.  I was horribly sick for a year and a half before getting a dx.  That was 3 years ago.  I now have very swollen joints and a definite malar rash at times.  It's been quite a while since any lab has been run on me, but I'm thinking my sed rate is probably up at this time.  It is very common for people w/ autoimmune disorders to also have fibromyalgia.  The stress of being so very sick brings the fibro along too.  Don't be distracted by that.  Drs. don't jump into a lupus dx very quickly.  

Get copies of every test and even request the disc of any x-ray, MRI, CT, US, etc.  AND KEEP THEM IN A FILE.  Even if the test was negative.  Later on if they tell you that is just the way something is made, you will have them to compare.  

Let us know what your ANA level has been and the pattern.  

Praying for you sweetie, we've been right where you are.
Kara