Discussions By Condition: I cannot get a diagnosis.

Dr. House Needed

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: HeatherVT
  • January 30, 2011
  • 07:45 PM

I have the following and no one can seem to connect the dots . In order of occurrence - and I need a real "Dr. House"
Early GI problems - 20's dx IBD
Gluten Free for 10 years - seemed to help IBD. Subsequent testing has ruled out Celiac or Wheat allergies.
Then additional issues started cropping up-
Kidney cysts - last look no follow up required.
Fatigue
Cognitive Difficulty
Achy all over - as if I am one day before getting the flu everyday.
Increase in blood pressure - prior to the last 3 years always had very low blood pressure.
Sudden Periodontal Disease - no gum issues in 2005 and 3 years later potential for tooth loss with significant bone loss.
DX 2010 with Crohn's - no malignancy in GI tract.
Headaches - not typical - feel like I have a hat on my head.
Swelling - generalized especially when exercising - low ability to sweat.
Rash - more like blisters. Started to come and go without being wide spread primarily on scalp then recently covered all over my body. DX PLEVA because of rarity of PLEVA - getting 2nd derm opinion - biopsy inconclusive not responsive to antibiotics or steroids. Does not itch and skin peels off. First thought from PCP was pemphagis.
Waxing and waning lymph swelling. Primarily in neck and behind ears and back of head.
Blood work is relatively normal. Thyroid normal. MD was amazed that even at the height of my blistering rash that blood work all appeared fine.
Lupus and other autoimmune disorders already ruled out.
Please provide me with any suggestions for additional tests or things to rule out.

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2 Replies:

  • I have the following and no one can seem to connect the dots . In order of occurrence - and I need a real "Dr. House"Early GI problems - 20's dx IBDGluten Free for 10 years - seemed to help IBD. Subsequent testing has ruled out Celiac or Wheat allergies.Then additional issues started cropping up-Kidney cysts - last look no follow up required.Fatigue Cognitive DifficultyAchy all over - as if I am one day before getting the flu everyday.Increase in blood pressure - prior to the last 3 years always had very low blood pressure. Sudden Periodontal Disease - no gum issues in 2005 and 3 years later potential for tooth loss with significant bone loss.DX 2010 with Crohn's - no malignancy in GI tract.Headaches - not typical - feel like I have a hat on my head.Swelling - generalized especially when exercising - low ability to sweat.Rash - more like blisters. Started to come and go without being wide spread primarily on scalp then recently covered all over my body. DX PLEVA because of rarity of PLEVA - getting 2nd derm opinion - biopsy inconclusive not responsive to antibiotics or steroids. Does not itch and skin peels off. First thought from PCP was pemphagis. Waxing and waning lymph swelling. Primarily in neck and behind ears and back of head.Blood work is relatively normal. Thyroid normal. MD was amazed that even at the height of my blistering rash that blood work all appeared fine.Lupus and other autoimmune disorders already ruled out. Please provide me with any suggestions for additional tests or things to rule out.Have you been tested for HLA-B27? Do you know your blood type and Rh Factor? Do you have thick blood?You can reply or google Rh Negative Autoimmune, if you think this sounds relative...
    thefarrellfam 46 Replies
    • February 26, 2011
    • 07:05 AM
    • 0
    Flag this Response
  • I have the following and no one can seem to connect the dots . In order of occurrence - and I need a real "Dr. House"Early GI problems - 20's dx IBDGluten Free for 10 years - seemed to help IBD. Subsequent testing has ruled out Celiac or Wheat allergies.Then additional issues started cropping up-Kidney cysts - last look no follow up required.Fatigue Cognitive DifficultyAchy all over - as if I am one day before getting the flu everyday.Increase in blood pressure - prior to the last 3 years always had very low blood pressure. Sudden Periodontal Disease - no gum issues in 2005 and 3 years later potential for tooth loss with significant bone loss.DX 2010 with Crohn's - no malignancy in GI tract.Headaches - not typical - feel like I have a hat on my head.Swelling - generalized especially when exercising - low ability to sweat.Rash - more like blisters. Started to come and go without being wide spread primarily on scalp then recently covered all over my body. DX PLEVA because of rarity of PLEVA - getting 2nd derm opinion - biopsy inconclusive not responsive to antibiotics or steroids. Does not itch and skin peels off. First thought from PCP was pemphagis. Waxing and waning lymph swelling. Primarily in neck and behind ears and back of head.Blood work is relatively normal. Thyroid normal. MD was amazed that even at the height of my blistering rash that blood work all appeared fine.Lupus and other autoimmune disorders already ruled out. Please provide me with any suggestions for additional tests or things to rule out.Cialiac's wont show up if you are gluten free. Lupus can take up to 4 years to appear in blood work. Fibromyalgia can cause some of the pain, headache issues, but not the skin issues. I am flummoxed by this, unless there is more than one thing going on.
    jackrorabbit 113 Replies Flag this Response
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