A nurse and undiagnosed for 10 yrs( YES 10 YEARS)

[asickmom]

I simply would like to know what medical condition I have. I'm 5'5 and 140 lbs., but I look a mess.  I have black circles around my eyes,  I have extreme bone and muscle pain,stiffness, extreme weakness, on my arms, legs, right side of temple, neck,hips, feet, hands, shoulders (usually my right side).  I have a strange feeling around my right hip, around to my right buttocks, and thru the right side of my private area like a circle.  My right hand falls asleep constantly.  I have nausea at times. I feel like I'm in a fog state of mind at times.  Sometimes after I eat, I have extreme bloating and pain in my abdominal area and feels very tender to the point I can't lay down or stand up but just writhe in pain.  I have intermittent diarrhea and constipation and sometimes I see a mid-size piece of fatty tissue in my stool which is very foul smelling. I used to have rashes that looked like welts and redness mainly on my hands, chest, stomache,face and thighs (but now after so many years I don't have it).  I had a bald spot, the size of six quarters about 10 yrs ago on the back of my lower part of my head and I have thinning hair now. I can't sleep at night because I'm in so much pain (feels like burning).  A rheumatologist said I had neurosarcoidosis, but my neurologist did testing on me and said that it is not neurosarcoidosis and he doesn't know what it is at this point.   Most of my tests the ANA comes out positive, my rheum factor was high,( rheumatoid arthritis runs in my family), I had hilar adenopathy at one point, I have proteins in my urine, and my ace level was high. I'm now on long term disability, but would like to go back to work as a nurse. What is it?  Please Help me!!!

[lauren7960]

Get checked for Lupus, I didn't see you mention this, but I would assume this would be the first thing they would look for. If it is Lupus, stick to a diet of all protein and symptoms may improve.

[uk2]

Hi

I can identify with the hip pain going round your buttocks into your privates iv not talked to anyone else who had this i norm post on the MS and Fibro site. Its this pain in my hips thigh thing that stops me walking far at all and the ankle pain i get.
I have IBS i dont have the dirrahea but i have consipation i live on fibrogel and lactolose which helps with the bloating i get my tummy looks like im pregnant sometimes lol.
It sounds like fibro to me with ibs but i would get your bowels checked out i did with mine i didnt have the bowel one but they did stick a tube down my tummy as i was having awfull reflux they found nothing and gave me tablets and said it was my IBS i changed my diet gave up smocking and drunk aloe vera juice and it settled down.
I get constant flares of muscle and nerve pain i cant work either just about look after my three kids sometimes, iv found lyrica to help im on 375mg now.

Iv had a clear MRI of the brain and spine and now am awaiting a MRI of the pelvic area and a LP and EMG iv had a ton of blood work done and am awaiting results.

I hope you get some answers soon.

God Bless

[PlateletGal]

"which by the way is a major problem in this country."

Yes it is !

[asickmom]

Thankyou for your comment.  Actually my mom goes to the Mayo Clinic and she also says it's a good place to go to.  But believe it or not, I don't have insurance at this point, but I will starting in October.  I know that the Mayo Clinic will not take anyone that doesn't have insurance, which by the way is a major problem in this country.  I've seen so many doctors its awful.  I think I will go to the Mayo Clinic.  Thankyou very much.

[PlateletGal]

I'm going to buy Professor Martin Pall's new book, "Explaining 'Unexplained Illnesses'; Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibro­myalgia, Post-Traumatic Stress Disorder, and Others". Professor Hall is a brilliant man....he had CFS after he developed a bad case of shingles. Fortunately now he is fully recovered but his experience had prompted him to dedicate the rest of his scientific career to help physicians' and patients' understand the mechanisms that cause pervasive, yet poorly treated conditions.

I may also check into Project Day --- thanks for the info.

[PlateletGal]

I've read Dr. Garth Nicolson's report on mycoplasma found in CFS patients'. I believe they also found the bacteria in FM patients' as well --- it is in the tissues.

[PlateletGal]

I agree that you could have Celiac disease or gluten intolerance (my physician tells me that having a gluten intolerance is not necessarily Celiac disease).

Also you may want to consider checking into a physician that knows how to diagnose both CFS and fibromyalgia. Also consider having your cortisol level tested.... weakness can go along with CFS and so can a low cortisol level. I can tell you that 29% of fibromyalgia patients' have a positive ANA titer (vs. 25% of CFS patients') and 21.5% of fibromyalgia patients' have a positive rheum factor.

AB0765   INFLAMMATORY FIBROMYALGIA : IS IT REAL ?
S. K. Metyas1, D. G. Arkfeld2, J. A. Ibrahim3, G. Ehresmann2
1Rheumatology, University of Southern California - Keck School of Medicine, 2Rheumatology, University of Southern California- Keck School of Medicine, Los Angeles, 3Rheumatology, Research associate, Covina, California, United States

[tanns]

Have you ever considered going to a hospital like the Mayo Clinic?  I only mention them because that is where I went and can only tell you about my experience there.  I went for a cardiologist but ended up seeing quite a few other docs.  The cardiologist sent me to an internal med doc and my initial visit was 2 hours.  It was amazing.  He was very thorough and after my visit with him he scheduled me out to a few other disciplines within the Clinic.  The best "doctor" experience I have ever had.  I highly recommend it if you can.  

Best of luck to you.

[vej]

I'm not a Doctor but I have a question. Have you been checked for celiac disease? Malabsorption of nutrients might account for a wide range of symptoms. Rashes, acute indigestion/reflux and headaches all often go along with gluten intolerance.

[Kevin Pho, MD]

It is difficult to give a concrete diagnosis over the internet without evaluation.

I agree with the tests that have been done.  

The bone pain should be further evaluated with a bone scan to evaluate for any possible bony lesions or cancer.  

The GI issues can be tested with an endoscopy like a colonoscopy.  Colitis as well as inflammatory bowel disease should be evaluated for.  Malabsorption can also be considered by evaluating the stool for fat as well as obtaining blood tests looking for celiac disease.  

If negative, irritable bowel disease can be considered and treatment for this condition optimized.  

Regarding the hair, this can be caused by a variety of rheumatogical conditions.  Skin disease can also lead to this - and a dermatologist's opinion can be sought.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_