what specialty is best to see? rheumatology? neurology?

[jenship]

I am a 36 year old woman who is also a nurse. I always considered myself healthy up until recently. My issues started about 4-5 yrs ago and keep getting worse. At this point, I feel lost. Especially since I'm a nurse, you would think that I would be able to go to a doctor and describe accurately and how feel so we can get a diagnosis.

I would absolutely LOVE if anyone can point me in the right direction. I will try to keep my story short but list everything leading up to the present. Any input would be greatly appreciated.

I had a flu shot in 2006 and my arm was really sore afterwards. The pain wasn't getting better so I figured that I would go see my doctor just to get something beside ibuprofen to get over the side effect. When I went to see my doctor, he did a neck Xray and immediately sent me for an MRI. To make a long story short, the MRI showed a congenital fusion of C4-C5 and herniation of C5-C6 along with some bulging disks lower. I saw one neurosurgeon who told me that I had the neck of an 85 year old. I ended up needing surgery and underwent a cervical fusion and removal of bone spurs in May 2007.

After my neck surgery, i still had alot of pain. It wasn't the same type of pain. It was more of a burning pain. I am also very sensitive to temperature in my arms and always need them covered since surgery. I also started having these flushing episodes of my arms and upper body. They seem to happen with exertion or pressure. Like when having a bowel movement or getting my blood pressure taken. I started developing pain in my lower extremities. I'm now to the point where I feel severe stiffness and pain in every joint. If i sit for even a short period of time, i am so stiff that i lose my balance when i get up to walk.

I saw a rhematologist and these are some of my abnormal/pertinent test results....sed rate 42; wbc 11.12; rheumatoid factor 7 (norm is <14); complement C3 and C4 -normal; cpk 69; ana - neg. My ACE level was elevated. I was sent for a chest xray which ruled out sarcoidosis. I had a total body bone scan. It showed areas of uptake in my R femur and L skull. The doctor wasnt too concerned because it didnt have anything to do with my arm or neck pain. I did have Xrays of the femur and skull after the bone scan but havent gotten the results yet.

The rheumatologist said that we should just keep repeating the blood work until something comes back more abnormal. But, while I wait, I feel worse. His comment regarding my case is...patient with neuropathy in several areas and also prior C spine fusion for congenital reasons now with what appears autonomic dysfunction, flushing, BP alterations with neuropathic pain of unknown origin.

I also havent had my menstrual period in about 8 months. I saw my gynecologist. All my labs were normal except my prolactin level was high. He did a MRI of my head because usually elevated prolactin is caused by pituitary adenomas (noncancerous cysts). My pituitary was fine. But my MRI showed areas of increased signal in some areas of my brain. The MRI report said these areas are non-specific and may be age related. Should 36 year olds have age related brain changes? I am now on medication to lower my prolactin level but still no period. My belly looks like I am 6 months pregnant. And I have terrible swelling of my legs. An extra FYI - i did have toxemia when i was pregnant.

So since i was pregnant, my blood pressure has remained elevated but controlled with medication.

I took all my information to my family doctor. He stood there shaking his head saying that he didnt know where to go next. But he set me up to see a neurologist. The rheumatogist also agreed to see a neurologist next.

In the meantime, I have such terrible joint pain that I feel if it keeps progressing that I soon wont even be able to walk. I feel tired and cranky all the time. I have a beautiful 4 year old daughter and i just want to be able to enjoy life with her and right now I'm not because overall, I just dont feel good.

Thanks for reading my book. So much for keeping it short. Any thoughts would be greatly appreciated.

[jenship]

thanks for the input. i've had my thyroid checked a few times and it's always in normal limits. I'm not sure if i had thyroid antibodies done though. I felt a little disappointed with my rhematologist. I went to university of pennsylvania hospital in philadelphia thinking that it was a big city teaching hospital. This doctor had several articles published in the journal of rheumatology. When i left, i thought i probably could of gotten the same care locally. thanks again.

[carolanivey]

I also wanted to suggest finding a different rheumatologist. A rheumie that looks ONLY at blood work isn't actively trying out treatments to relieve your pain isn't worth his diploma, IMHO. A good rheumie will look at the whole picture, not just wait for something to pop up on the blood panels. Look at the Arthritis Foundation's web site or the Mayo Clinic site for lists of symptoms for a wide range of AI disorders. Maybe something will jump out at you. Good luck!

[carolanivey]

I wish I had answers for you, but I just wanted to respond so you wouldn't think you're being ignored. :)

I'm reading so much recently about autoimmune thyroid problems, I'm wondering if you've had your thyroid levels checked, specifically for thyroid antibodies? Pregnancy alters your immune system temporarily so that your body doesn't reject the fetus as foreign tissue. I'm wondering if something didn't "click back into place" after your daughter was born. AI disorders are terribly hard to pin down sometimes because no two patients exhibit the same symptoms.

Being tired, cranky and achy MIGHT be thyroid related, so if you haven't been screened, it might be worth it to get it done. Hang in there!