Rare Diseases Community
BladeBabe
About This Community:

This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

BladeBabe

Hi, Ive got an odd rash on my right inner calf area. I have had this rash for the past 5 yrs. Drs. have tried anti-fungals, antibiotics, steroid treatments, just about everything. It is extremely painful and itches so badly that if possible I'd like my bone to be taken out and scrubbed with a steel wire brush! It "oozes" a clear (slightly blood tinged) substance.

I have been lucky and it has gone dorment on 3 occasions. One was when I went to a full body high strength tanning bed for 5 visits, the other 2 were when I went to public lakes and waded.  Other than the pain and itching I have no feeling in the effected area. The effected areas pigmentation has darkened (Im normally "tan" the areas are now brown) and has pale almost white spots where the rash has been.

I have had this problem in all weathers, any and all clothing, detergents, soaps. It is not a contact dementitis. I do not take any meds on a regular basis (not even OTC). When it gets into "high gear" the oozings actually turn black - ER DR. thought it was gangrene on several occasions. Luckily is wasn't. My stress level doesn't effect it either.

I also get migraines, chills so violent I become physically ill from the shaking - I learned not to clench my teeth when this happens when I broke 2 molars, feel like I have a horrid case of the flu, and am can easily sleep days on end. Last trip to ER DR. was livid when he found out I still have the rash and the symptoms are worsening.

I have looked all over the web. At this point I feel I may be becoming a hypochondriac as it matches 1 Million things.. yet matches 0 at the same time!
Related Discussions
3 Comments Post a Comment
Blank
Avatar_f_tn
Hi,
Since you mentioned that you are chronically tired and feel flu-like symptoms all the time, I'm thinking that the rash may be an infected sore, or perhaps treatment-resistant eczema.  All of the ablove are symptoms of an immune deficiency disease.

I have one called CVID and I suffered for 21 years before I was diagnosed.  The problem is that most docs just draw blood and look at your immunoglobulin levels, if they are normal, they assume your immune system is fine.  But, that is not the case.  Many immune disorders can be present even when immunoglobulin levels are normal or even when levels are better than normal.  You have to have a test done where they give you a vaccine and then test your blood a week later to see if you produced any antibodies to the vaccine or not.

I'd suggest going to www.primaryimmune.org and www.info4pi.org.  You can read about the symptoms of immune deficiencies and also find a good immunologist affiliated with one of the Foundations.  If there isn't a specialist doctor in your area, the Immune Deficiency Foundation provides a free service where they get one of their immunologists to consult with your primary care doctor.

Immune disorders are very rare and tricky to diagnose, so whenever I see someone with symptoms like mine I want them to investigate the possibility that they have one because I don't want anyone to have to live in misery for 2 decades like I did before they get some answers.

Even if a primary care doctor has tested you before, I think you should find a specialist and get tested again - especially if they did not do the 2 step antibody test.

Hope this helps.
E
Blank
Avatar_f_tn
Thank you!
Blank
Avatar_f_tn
Keep us posted on what you find out.
E
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Rare Diseases Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Rare Diseases Answerers
620923_tn?1416285879
Blank
selmaS
Allentown, PA