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Undiagnosed syndrome/collection of symtoms

I have has a collection of symptoms for which I have been trying to get a comprehensive diagnosis for about 15 years.  My rheumotologist and an array of other doctors are all stumped.  I am sort of at my whit's end because my symptoms continue to get worse despite my doctors' best efforts.  I am hoping perhaps the joint experience of this community might give me some ideas of how to continue to find answers.  

Since I was a late teen, I have gone through periods of severe fatigue which have become more frequent in recent years.  The fatigue comes with all over body aches and often swollen glands.  I get sore joints with my knees being the primary offenders. There is no visible damage to my joints on an xray.  Prior to being put on Plaquenil,  I would get a red, hot rash over my left and sometimes right knee each evening.  The size and severity of the rash would depend on how tired or stressed I felt.  The pain came and went with the rash.  I frequently have issues with muscle spasms in my back or shoulder.

I get recurrent ulcers in and around my mouth and sometimes even nose or scalp.  (Herpes simplex has been ruled out through lab cultures.)  I sometimes randomly break out into hives all over my body.  I also get recurrent upper respiratory infections, which have improved but not entirely resolved by sinus surgery.  

In my early 20's, I went through a period of frequent kidney stones and/or infections.  More recently, I have been struggling with stomach pain and IBS symptoms.  I have done a colonoscopy to rule out celiac disease and ulcerative colitis.

Most recently, I have been getting neurological symptoms.  I have nearly constant pins and needle symptoms in my hands and feet.  I have also had some trouble gripping things with my right hand.  I just did an MRI to rule out MS, which was clear.  

I am not deficient in Vitamin B or D.  I also test negative for Sjogren's syndrome. My ANA tests always come back negative.  I don't have an elevated Sed Rate or C-reactive protein.

At this point, I have been diagnosed with fibromyalgia.  However, that would not explain the inflammatory symptoms like rashes, swollen knees or mouth ulcers.  

I would appreciate any ideas for further tests, specialists, etc.
2 Responses
Avatar universal
Am trying to remember what this sounds like, something I ran across a few times researching my own condition.  Lupus and some other similar things don't always show up on ANA but I don't think that was it.  The knees in particular were mentioned as a major presenting area of inflammation and some rashes etc accompanied the disease I'm referring to, but my memory issues aren't cooperating.  Have printed out nearly all articles relating to my issues so I will let you know if I can find the one i'm thinking of. In the meantime try searching knee pain and inflammation along with dysautonomia.  You only have a couple symptoms of dysautonomia and only fatigue being a major one, but dysautonomia is my usual search term so it may lead you to what I found in conjunction with your knees. I do know it wasn't fibro and I believe it was some autoimmune or congenital protein processing issue.  Good luck
1530171 tn?1448129593
You should consider ruling out Vitamin D resistance, Methylocobalamin B12 deficiency , for which you need an MMA test.(Methylocobalamin is the bioavailable and neurological form of B12), and Hypothyroidism type 1 and type 2 (thyroid resistance) for which you need Free T3, Free T4 and Reverse T3 tests.
You should also rule out Candida and Leaky Gut Syndrome.
Best wishes,
Niko
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