I need advice! I have an autoimmune disorder that began at the age of 10, onset of puberty, started seeing specialists that could not diagnose me. I am severely allergic to my own progesterone and suffer anaphylactic shock. I have been forced by the medical community to survive on my own using my own research and natural meds due to being thought of as a hypochondriac. I've seen 16 specialist in the last 3 years, one for just about every organ in my body, had many misdiagnosis including fibromyalgia, anxiety/depression disorder, psychosomatic, etc all treated with meds that caused more damage. I have lived and survived this condition for 24 yrs without ANY proper medical treatment due to what was written in my medical records. I was diagnosed a little over a year ago by immunology because I demanded the testing or they never would have found it. I now have epinephrine and am on an all natural estrogen that is doing well most of the time compared to various organs failing almost every month from anaphylactic shock. I suffer a slow forming anaphylaxis and most of my reactions are internalized effecting my organs and muscles. When I was tested for this condition with depo provera, my reaction was positive but showed no external symptoms, I developed giant painful satellite lesions under my skin that lasted for several days. For years. I have suffered frequent bacterial, viral, fungal infections, seizures/TIA, cardiac complications, vomiting from stomach spasms, diarhea, PTSD from near death experiences and no treatment, lungs closing, throat swelling, vision/hearing disturbances, anxiety/depression, ADD, parasomnias, migraines, etc. All of which is attributed to having high histamine levels due to it being a potent neurological transmitter and it's receptors located in every cell of the body. The constant high histamine affects every part of my body. I am also allergic to my own sweat, tears, foods, environmental allergens, drinks, chemicals, and almost all prescription meds due to lack of diagnosis and proper treatment. My treatment options were ooporectomy which I could not have synthetic hormones (very intolerant), or Lupron which could cause unstoppable life threatening allergic reaction. My ob/gyn warned me of both these treatments and the possibility of causing more health problems on top of the ones I already suffer or even death. I chose the safest most beneficial treatment I could find but I do still have problems that are minor compared to the life threatening reactions. These include joint pain, stomach spasms, flu symptoms, vomiting, severe fatigue, etc. about 10 days before my period.
Anyway, I have tried working since the age of 16, obviously have never been able to keep a job because of my condition, so I went into self employment but I'm still limited about 2 weeks out of every month. I was majoring in bio-chem thank goodness or I'd still have no treatment. I filed for disability and of course was turned down. Been fighting it for 2 yrs and my doctors, even my specialists, refuse to fill out the paper work for my attorneys because they don't want any involvement. Plus, they never saw me during emergent times because I've been under treatment since diagnosis. All of my ER records state that I was suffering anxiety attacks even though my blood oxygen levels were at 80%, I was vomiting blood, given pain meds for severe burning muscles and stomach spasms, put on a heart monitor for a month for cardiac events, seizuring. They never treated me for the anaphylaxis because I had not been diagnosed yet and they had no clue what was wrong with me. Now, no one will help me get disability, the docs do not understand how disabling this condition is or how high histamine can effect a person in these ways. EVEN WITH BEING TESTED AND DIAGNOSED! I refuse most prescription meds due to severe reactions to them in the past which also doesn't help because then they write that I refuse treatment in my records. Sorry, but I know what the drugs do to me, I have liver disease from all the meds before diagnosis, and I prefer to not tempt death anymore than I already have. I have 4 children, work when I can but we are not going to make it if I can not get disability. My doctors will not help me!!! I can not get any kind of assistance because my husband makes $30 a month too much in GROSS income and he's a marine vet. What do we do??? Are there any doctors here that can help me? Any one with advice?!
I suffer from anaphylaxis 2 weeks out of every month (starting at ovulation and ceasing the first day of my period). My throat swells and my voice is very high pitched. It all started when I received a progesterone injection for my second pregnancy after going into preterm labor at 17 weeks with my first son. I have since been diagnosed with hereditary angioedema type III and I undergo some pretty intense IV infusions and intramuscular shots to try and manage it but it only suppresses the swelling temporarily. Do you think it's possible that it is actually progesterone induced anaphylaxis?
I am also part of the IDF which is the immune deficiency foundation.
I believe that they include angioedema in their group of complement deficiencies. They have been very helpful on the phone and also the on line site has tons of info about immune deficiencies. They can help with insurance, and infusion information.
They can also recommend specialists in your area, that know about immune deficiencies and what to test for and what to rule out for a diagnosis.
Don't know if you will both find the answers you need, but hope this link will help.
It is www.primaryimmune.org
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