Thank you for the quick answer. it helps. I have also been diagnosed with Stiff Person's Syndrome(another auto immune disease) which I have had for 15 years but was only diagnosed in 2008, because where I lived they assumed drugs or alcohol as the reason for my troubles.
Although my doctor diagnosed me with pernicious anemia in 2004 he refused the B 12 shots which made me feel better. He did not believe his own test results or thought I was hiding something, I don't know. I have or have had all the symptoms listed. He even gave me a placebo shot once and when I reported that his last shot did not seem to help he confessed and said "there, now I guess that proves it" yet I still had to fight to get the B12 shot. I get my B12 regular now but am afraid that the damages to my nerves will not heal after so long without treatment. I was sick a long time before he diagnosed pernicious anemia and has tested me for it several times over the years as well as my thyroid and what ever else he thought of. I have it. I have none of the other illnesses mentioned as I have been tested and finally diagnosed with the SPS by a neurologist. So I am wondering why I feel sick all the time despite my medicines, B12 shots and IVIG infusions I receive every 3 weeks? I have never been a drinker or a drug user these were assumptions used to determine my treatment which for years was "go home, there is nothing wrong with you".
He still has suspicions of me and still fights about giving me the B12 shot so I moved to a larger city where my neurologist is that diagnosed my SPS in 2008.
Now I have to break in a new Family Doctor who probably has never heard of Stiff Person's Syndrome. Most doctor's don't want me because my case is too complicated and takes real doctor work. This I have been told by those in the medical field.
Am I dying now? I really need to know so I can arrange my life accordingly.
I am new here and no doctor will say anything to me as they don't understand my history and most have never heard of Stiff Person's Syndrome, which is also linked to diabeties, which I also don't have.
My neurologist says I contracted all my problems from my botched surgeries of '93 and '94.
I can tell when I really need one (B12 shot) because my hands hurt bad, get weak, numb, tingly and my diarrhea increases. After the shot these things ease up although I never seem to get rid of the diarrhea.
I went years without a diagnosis or treatment until it could no longer be ignored and am afraid it is too late now to reverse the damages to my hands and other things the neglect caused.
I have been tested for everything because my doctor did not want to admit I needed the B12 shot due to pernicious anemia. He believed it was self inflicted somehow but was not.
I had 2 back surgeries a year apart in '93 and '94 at which time my symptoms developed. I was basically ignored by the doctors for years and suffered tremendously for it. Now I sometimes don't make it to the bathroom in time if my shot is withheld.
So I am wondering why I feel so sick and weak all the time and exertion makes it worse. It is difficult to get the neccesities done each day as I am always so sick. I used to recover better than this between treatments but now I seem to just maintain or feel worse.
I have a suspicion I am dying now, quicker than would have been neccesary if the doctor had believed me and helped me from the first time he discovered pernicious anemia. I feel myself going downhill everyday. I wake up sick, I go to bed sick. There is no longer a break.
Having moved I am alone with no family or friends as yet to help me.
It is hard to get out and get any help as the requirements of waiting in line or taking buses to and from agencies takes from my ability to care for my personal home needs.
I am still trying to get the help I need but there is so much to do, I am all alone, and I live in a 15' trailer so it is hard to find room to organize my life.
What I really want to know is it too late now to fix the nerve damages to my hands? Is my nervous damage too far gone?
They can get so bad I can't do buttons, zippers etc. and the pain makes me cry. I am also running a constant low grade fever which just started recently on top of everything else. Is this normal for auto immune diseases?
Thanks for listening.
Brokenup