18th November 2004
Hi all. Next week will be the 3 year mark for my battle with hives. I have been on tons of different antihistimes and all kinds of other junk that did not work and I can still report that the only relief that I get is from taking Sulfasalizine. I get some pressure hives ( DPU ) and certain times of the month can be kinda bad. I have a notebook of probably 50 pages of medical info and know more than I ever wanted to know about hives. Still no %100, never have another red itchy swollen place on my body yet.
I have an appt. with a Dermatoligist in December and I am going in totally armed and will not walk out without deciding on what the next step will be.
I do not believe this is an allergy, or a genetic disorder. I do not get hives from eating anything, or from soap, clothes detergent, or perfume. I do not get them from STRESS! I get them for some stupid reason and I am going to find a way to get rid of them for good.
I want my life back! I wanna go skiing, roller skating, ride bikes, go shopping, and just play without wondering if I am going to PAY for all the fun a few hours later by being swollen and unable to walk, wear shoes. I wanna wear a shirt tucked in and a belt! I want to be able to wear a bra that is not so loose and try on shoes. I want to play with my kids.
Some of the meds I am looking into helping me are strong and potentially very dangerous and I even hate needles. But at this point I am willing to tell them to put me through any torture, poison me with chemo meds and do a complete blood transfusion if needed. I am so done with antihistimines and hearing well, try this.
I have spent countless hours doing RESEARCH. I even understand the medical stuff now. I read stuff to my hubby and he looks at me like I am speaking a different language.
Here is some of the stuff I have read about.
Plasmaphoresis........Omalizumab. ( Xoliar ).....Immunoglobulin injections....Warfarin therapy ( Coumidin )....cyclosporin.......Methotrexate.......Azathioprine.......Desloratidine..gold....Vitamin C......attenuated androgens......Dapsone.....Bioflavonoids.......Quercetine......digestive disorders......DNA Plasmid Vaccines.
Also...IgE- mediated processes....mast cells........angioedema.....Autoimmune diseases.. Immunosupressants like Neoral and Sandimmune....Dermagraphism......Heliobactor pylori infections......High-affinity IgE..... molecules.........basophiles...........lymphocytes........monocytes.........neutrophiles.....fibroblasts..........C3......C4..... Corticosteroids.....H2 and H1 blockers........ASST.....( Autologous serum skin test )............and that is just the tip of all the stuff I have in my notebook.
For those of you searching like me. Keep looking and check out some of the stuff on this. You will be very busy. I am my own Dr. in my eyes these days. It is up to me to find the magic bullet.
Sadlyn....I do have MVP and I do believe there is some small connection but can't say for sure of course. Both have in common are autoimmune and the autonaumic system. I have seen several bits of info linking the two but no details yet.
If you right click on my user name on here and then you can read past posts by me for more info if ya want. I will post more in a few weeks. Happy Turkey Day to all !
I have an appt. with a Dermatoligist in December and I am going in totally armed and will not walk out without deciding on what the next step will be.
I do not believe this is an allergy, or a genetic disorder. I do not get hives from eating anything, or from soap, clothes detergent, or perfume. I do not get them from STRESS! I get them for some stupid reason and I am going to find a way to get rid of them for good.
I want my life back! I wanna go skiing, roller skating, ride bikes, go shopping, and just play without wondering if I am going to PAY for all the fun a few hours later by being swollen and unable to walk, wear shoes. I wanna wear a shirt tucked in and a belt! I want to be able to wear a bra that is not so loose and try on shoes. I want to play with my kids.
Some of the meds I am looking into helping me are strong and potentially very dangerous and I even hate needles. But at this point I am willing to tell them to put me through any torture, poison me with chemo meds and do a complete blood transfusion if needed. I am so done with antihistimines and hearing well, try this.
I have spent countless hours doing RESEARCH. I even understand the medical stuff now. I read stuff to my hubby and he looks at me like I am speaking a different language.
Here is some of the stuff I have read about.
Plasmaphoresis........Omalizumab. ( Xoliar ).....Immunoglobulin injections....Warfarin therapy ( Coumidin )....cyclosporin.......Methotrexate.......Azathioprine.......Desloratidine..gold....Vitamin C......attenuated androgens......Dapsone.....Bioflavonoids.......Quercetine......digestive disorders......DNA Plasmid Vaccines.
Also...IgE- mediated processes....mast cells........angioedema.....Autoimmune diseases.. Immunosupressants like Neoral and Sandimmune....Dermagraphism......Heliobactor pylori infections......High-affinity IgE..... molecules.........basophiles...........lymphocytes........monocytes.........neutrophiles.....fibroblasts..........C3......C4..... Corticosteroids.....H2 and H1 blockers........ASST.....( Autologous serum skin test )............and that is just the tip of all the stuff I have in my notebook.
For those of you searching like me. Keep looking and check out some of the stuff on this. You will be very busy. I am my own Dr. in my eyes these days. It is up to me to find the magic bullet.
Sadlyn....I do have MVP and I do believe there is some small connection but can't say for sure of course. Both have in common are autoimmune and the autonaumic system. I have seen several bits of info linking the two but no details yet.
If you right click on my user name on here and then you can read past posts by me for more info if ya want. I will post more in a few weeks. Happy Turkey Day to all !