Avatar universal

is it autoimmune? neurological?

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.
3 Responses
Avatar universal
Sero-negative RA is possible and they really should treat your joint pain just based on sx. Check out scleroderma as well. Something autoimmune it seems for sure. Did you say you're pregnant right now? I know during my second pregnancy is when a lot of things got worse for me.
Avatar universal
Post this question in the ASK EXPERTS section .  And ask Dr Garth Nicholson.   There is a chance you might have a chronic intracellular bacterial infection or possibly Lyme disease.  Check out www.immed.org (Dr Nicolsons site) and look under Autoimmune Illnesses and bacteria/fungal infections causing AI issues.  No standard medical doctor is going to figure this out.  I am taking long term ABX and immune system boosters and I am getting better.  This could be an infectious Mycoplasma infection.
Avatar universal
Thanks for the input. I keep wondering why they never checked bloodwork for Lyme disease. God knows it seems like they checked everything else. I was pushed to see a pain management doctor because i think they keep thinking it's related to my neck problem. I believe my pain management doctor thinks I'm either a sissy or a drama queen. His most recent comment was...this is the way it it and you need to learn to deal with it. He said fibromyalgia. But my bloowork doesnt let me believe it's fibro. What exactly are you being treated for? Are you managed by infectious disease? Thanks again.
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