Discussions By Condition: I cannot get a diagnosis.

No diagnosis after 7 years (skin,joints etc)

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: mhairihorton
  • June 28, 2007
  • 08:41 AM

My mum has had the following for 7 years.....the skin symptons are not always present and tend to go away after 2/3 weeks. However recently they have been lasting for 3/4 months and she is getting increasingly tired and drained. She is 57, has previously had a form of tb when she was 25(lumps of the legs which they called eurythema nodosum), but this wasn't the same. rheumatic fever twice too when she was young.

symptoms
large red rash on groin area and top of legs - burning and very painful. No cream, steriods or any other medicine has stopped these. it usually turns dark red/purple towards the end. Very hot and sometimes weeps but generally doesn't look like excema or any other skin condition i have seen.

very tired generally all of the time

lots of pain in her joints all the time

she has seen SO many doctors and has been diagnosed with eurythema, sweets disease and lots of other things but no treatment has worked and then they withdraw the diagnosis. the only thing that clears it up is the sun. so the new expert is now saying she should have uv treatment.
she explains it as internal and not a skin thing. she feels like something is attacking her from inside like a virus (which is also what the doctors say but they do not know what it could be - they can find something in her blood but i'm not sure they know).

is there any virus that could have these symptoms and would go away with uv treatment??

ANY help would be appreciated.

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8 Replies:

  • Do you mean sarcoidosis, which is NOT tb? But rather a lung inflammation. Erythema nodusum is a symptom of that disease.
    rad-skw 1605 Replies Flag this Response
  • no she had no lung symptoms at the time or ever since. she;s also had variuos lung tests and scans and these all are fine.but was told that her strange lumps on her legs were tb related / eurythema - she also passed this onto me when she was pregnant and had symptoms then. i've only had it twice.i'm not sure whether this has anything to do with her current illness ....it's just the doctors mentioning eurythema then and now. the symptoms are totally different?! back when she had me and before they were very raised lumps (like little golf balls) that would radiate alot of heat and were very painful. i remember the pain and i was little when i got them so i guess they were fairly painful!what she has now is nothing like bfore. any help would be appreciated....
    mhairihorton 3 Replies Flag this Response
  • In terms of just the rash, has this itself been diagnosed? As shingles? Or perhaps as abscesses? Is your mom diabetic?
    sylvie 31 Replies Flag this Response
  • no they say they cannot diagnose her. the skin looks like the main problem - sometimes it's so red and swollen it looks like someone has poured a kettle of hot water on her. but i'm not convinced it is a skin condition. she has seen so many dermatologists and not 1 can help her. she's not diabetic but diabetes does run in the family?? i'm pretty sure it's not shingles though......thanks for your help. what made you think it might be linked to diabetes?
    mhairihorton 3 Replies Flag this Response
  • Obviously I can't picture the rash you're describing as it probably is, but have you considered Rickettsia? The reason why I mentioned diabetes is because my sister has been experiencing issues since the birth of her second child, that include frequent blood infections.. they cause abscesses all over her body, but especially near lymph nodes- inner thighs, etc. They are extremely painful, and at first her doctor thought maybe they were ingrown hairs. But even after medication, they still came back. Apparently they can be drained as well. She has been using a glucose monitor just for her own personal reasons, and gradually started receiving high results.. the local clinic told her that she probably had developed Type II.
    sylvie 31 Replies Flag this Response
  • Dear original poster,prior TBErythema Nodosumburning painful rash...nothing clears it uphot.weeping rashtired all the timejoint/muscle pain have your mom's doctors consider CFS...chronic fatigue syndrome she is not alone. This forum is filled with people having CFS symptomsI was sick for a long time and was recently diagnosed correctly for the first time in my lifeHelp your mom by finding a local doc who doea NAET or Bioset therapy. It is the only thing that will really help. The regular docs will just give her meds to control her symptoms. She needs to fix the source of the problem. Her immune system is out of balance and sometimes the rashes come from being allergic to different things.There is a lot of information on this illness. It is becoming quite prevelant world wide.Best to you and mom...I wish you well...mommy cat
    mommy cat 1654 Replies Flag this Response
  • thank you momy cat and sylvie. i'm going to look into both of these asap. i really appreciate your help and advise..........it's nice to have feedback so quickly and help.big smiles to you both - thank you again.
    mhairihorton 3 Replies Flag this Response
  • Rikettsia is also a consideration for CFS. Many viral, bacterial coming into play with this illness. Best to you....mommy cat
    mommy cat 1654 Replies Flag this Response
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