- CASE FILE
Numerous autoimmune conditions, allergies that make it difficult to find medications that I can tolerate, symptoms that can't be explained.
ABOUT THIS CASE FILE
I have been to and through my PCP and sent to NUMEROUS specialists over the past 10 years and "no one seems to be able to come up with anything that can really help me. I have been to Drs that tell me that I am a "medical oddity", I am a "difficult case", "you make me think and make my head hurt", "well you have a lot of issues don't you" and then there have been Drs that have stuck by me and try to help me get answers. My rheumatologist even agreed that I should write to Chasing the Cure and see if you can help me. Some of my diagnoses have been Ankylosing spondylitis, Psoriatic arthritis, SAPHO syndrome, Lymphedema, diastolic congestive heart failure, asthma, lichen sclerosus, hidradenitis suppurativa, lichen simplex chronicus, chronic urticaria, allergies. I see a chiropractor regularly for back and neck pain and because I have ribs that seem to pop off my back bone and cause terrible pain as well as effects my breathing. I have gained well over 100 lbs. Some things I have been diagnosed with only to find out it was a side effect or something else all together; such as the lymphedema and asthma exacerbation and some of the chest and stomach distension went away when they finally diagnosed and treated me with Lasix for the heart failure. I have been on prednisone more than I have been off it in the past 10 years, since finding out about the heart failure I have now been off the steroids for over a year. I had a ganglion cyst on my foot that I had removed and that took almost 10 months to heal. My rheumatologist has tried several medications including methotrexate, sulfasalazine, hydroxychloroquine, humira, enbrel, Remicade, Simponi; and they either haven't worked or I have had a severe reaction to them. Right now I am not on anything other than Gabapentin and Celebrex for the pain and numbness, tingly burning sensations.For the heart failure I take 40 mg of Lasix a day as well as Potassium. I take numerous allergy meds as well as get Zolair allergy shots every 2 weeks. I just wish there was someone that could put everything together, all I have been through the symptoms, the tests the meds and be able to put a finger on it and find something that would work! I have been through so many tests and medications and Drs and specialists I have lost count and kind of lost hope, when I have a good day I try to do as many things as I can and try to be like the old me but then that is usually too much and I am down and out for a few days after and when I have bad days I try to do what I can and get through the day, I still work but there are days that I just can't. All of this has really done a toll on me, my husband left me a little over a year after we were married, I continually have to cancel plans to go out and do things, I can't go for walks, I can't garden; I just want a more active normal life again, I want to be a part of my family and play with my grand kids instead of just watching them.