First let me start off by apologizing if this is too long. I just need to start at the very beginning.
My maternal grandmother had myasthenia gravis. My mother had scleraderma, raynauds and ultimatley died from lupus, although no one knew what she really had until it was too late. I also have a maternal aunt and a maternal uncle that have had bouts with autoimmune illnesses although we are not close so I can not say for sure what they are.
Now I have a maternal cousin who has been suffering for a long time with her"mystery illness". Sometimes they tell her it is lupus, sometimes MS sometimes they just don't know. My brother has also been suffering with "something". They have bounced him around from fibrolyalgia, lupus, hashimotos thyroidosis, to now they aren't sure. They are both miserable. They have both had countless tests, seen countless doctors and specialists and tried countless different kinds of meds. And then there's me....I have been going through the same things although I am not sure just how long I will continue to go through this .....I don't know if I can handle much more. No one really knows what I have either. They just grab at straws. I have been to a rheumatologist and a dermatologist.....both were very disappointing. They dismissed me like I was a loon or something.....not to mention my general practioner and my ob/gyn.....I am on an antidepressant and muscle relaxer , NSAIDS and am now trying lyrica for fibromyalgia.......it is not working., I think I feel worse. But along with the painful joints, muscles, the fatigue, the sores in my mouth and nose and on my head, redness on my face and chest, rashes that come and go over various parts of my body........no one knows......or no one wants to diagnose anything......my ANA was normal.....but 10% of all lupus patients are normal.....my mom was and she died!! My brother and I are scared that this is our fate somehow.....It is so hard to "not feel well" 99% of the time......it is hard to not be able to sleep, it is hard to not be able to make love, or have fun with the family, or you feel like you are losing your mind......everyone thinks you are lazy or A HYPOCHONDRIAC.....it is hard to go to work when you are so sick and no one really knows, your boss just thinks you are a dead beat......why is it this way? Why doesn't anyone know what we have or what we need to do? What can we do? Why can't we get any answers....or relief? (by the way...we all have a little Native American in our lineage)
Thanks fo listening.....it is very frustrating.....
I look forward to hearing from you.