Thanks for the wonderful comments. After 4 years of my family physician...I dumped him and moved on to the University doctors...they were better but I was in a teaching setting and wasted most of my appointments giving my history to the rotating internists that I saw..(all which were nice by the way...but I wanted the same person) So I went to a local internist that said...I am too young of a doctor...you should stick to the University setting...so I went back again...and yet another new face internist...so I said NO MORE.
So I met with an internist that my new "more local" Rheumatologist recommended ...he gathered all my records and met with me yesterday with his decision to do more tests.
I took my husband with me..I was nervous...I thought...will he reject me to? will he call me a hypochondriac?
Well....he did neither ...Thank God! But he did blow me away with the tests he wanted and the specialists he wants me to see.
This is what he ordered:
Blood work...he said starting from scratch...other than the anti SSA and B that I had in June which was negative.
Here is the blood work list:
______(these were the ones he had to hand write..must be more rare)
Anti double stranded antibody
Anti SCL 70
Anti smooth muscle, antibody
Anti Mitochondrial Antibody
TESTS HE ORDERED WERE:
TEE..something with cardiac to look for infection
MRI of Brain to rule out MS
CT of chest and abdomen
The specialists he ordered were at a MAJOR clinic which is a three hour drive:
Rheumatologist..probably to confirm my diagnosis of sacroilitis
He said the three things that cause fever...but he doesn't think it is cancer because I have had it so long...and said to me...if I thought it might be cancer I would tell you...which is always nice to hear! He was very upfront...didn't treat me like an idiot or child..but did give me the lecture...get used to feeling sick...because whatever you have has a good probablility of being chronic.
So I cried on the way home...but I guess I am glad someone is taking an interest in me and actually took the time to look at all the specialists and tests and symptoms over the last year that have been plaguing me.
To answer Carrie...I went to physical therapy to strengthen muscles..I have been up to this point diagnosed with spondylotarthropathy due to the sacroilitis. I have been negligent of doing my exercises because I have been feeling tired and don't have the drive to do it ...but I do feel better when I exercise. I invested in a hydrotherapy tub and will start that next week...I am hoping that makes a difference. I used to work with the elderly...I feel like I have an old person's body..I have to pace myself...schedule "down time"...but I am not at the point I have to be on disability or anything so I feel fortunate. I know that I have permanent damage to my SI joints...but what is causing it? Could it be Lyme? or is it the mysterious "auto immune" we don't know what causes it? Have you tried warm water as therapy?
I also take max dose of Celebrex...can't seem to lower my dose..see a big difference. I have burning in suprapubic that coincides with flushed flash and temp...so I think that might be nerves in bladder? I have also had symptoms with breasts burning and possible milk coming in...weird huh They also said it could be Oestitis Pubis..which is the ligament in the front where pelvic bones attach. My bone scan was positive for that..but the Rheumatologist thinks that it is spondyloarthopathy when put it together with sacroilitis.
I have made contact with Lyme specialist..he is sending me info...I will make appointment then.. My neighbor had Lyme which got me to suspect this. He is not sure that he contracted in our immediate area. But since I am a girl scout leader and go camping frequently...hmmm My first Lyme test came back negative..but sounds like that doesn't mean anything...right?
My husband and I both liked the doctor and we are optomistic. We love his bluntness...he said what he thinks.
For those of you who have been to an infectioius agent...do they pursue Lyme disease aggressively?
I thank you all for your interest in my case...I welcome your comments.
Diagnosed with torn abdominal muscles in 2002...was this wrong?
Chronic pelvic and back pain...becoming worse in 2006...responded with NSAIDS
Diagnosed with oestitis pubis then seronegative spondyloarthopathy indicated by MRI sacroilitis
Persistent low grade fever...no diagnosis
Persistent burning and urinary frequency urgency...no diagnosis
Some neurological "incidents or events" with no conclusions hemifacial drooping that was transient 4 episodes..CAT scan negative in Feb.
Muscle twitching since March...no diagnosis
Currently being screened for MS..won't know for a while. Considering Neuro Lyme differential...
IBS after intestinal spasms...2007
Gerd since 1997
Meds: Max dose Celebrex and Nexium...Davrocet prn and Bentyl prn