I have actually been resting these past few days

August 31, 2008 at 2:52 am

Actually since Monday I have been resting. At least trying to. Did my canning of nine jars on Monday and was done. The rest of the week I have been taking it easy and not pushing myself at all. Even been trying to get as much sleep as I can. Here I am up at 2 in the morning and on fire again. All summer long I have been doing research of my symptoms and looked up just about every rare disorder there is that I could find online. Charcot Marie Tooth, ALS, MS. CIDP, Lupus complicatations. And have been looking up lab results online trying to figure out the results or what it could be indicating.
My labs are indicating tissue damage going on. I agree with that one! I don’t like what I see in my labs though. Decreased Immunoglobulin IGA Serum with a high LDH. High CK! I have found one disease that can cause CIDP and have these same type patterns and that would be Amyloidosis.
Some Lupus patients can go into Amyloidosis. That disease can attack the nervous system and many other parts of the body and can make you sick as a dog. No cure for it either. Thyroid nodule that has gone into cancer can also mimic the same pattern. But also Amyloidosis can attack the thyroid. Either way, I need treatment something aweful!
If I am not better by Monday! I’m giving myself til Monday. Most hospitals because of Labor Day weekend are short staffed. Meaning you would get admitted but will lay there until Monday anyway because of the staff! On call doctors are working instead of the other doctors that would normally be called in.
Like Tim said in a previous posting. Going in on Christmas is a bad idea! Labor Day weekend is a holiday too! Since Duke is taking it’s time getting me in and have not even scheduled me yet. I may just have to get my husband to go ahead and take me to the ER there. Certainly not going to the ER’s in my area. They will just send me home like they have all summer and I am getting fed up with being sent home. Then later pick up my records there and see labs that are not right. And notes the doctor has put down. Saying Neuropathy and Palpatations.
I really need to get that spinal done! That is a must! Called my neurologist this week after talking to my regular doctor and could only get the answering machine. The nurse listens to the calls and she will call you 2 weeks later. I’m fed up with these doctor’s in my town.
Don’t get me wrong! They do save lives and have a degree. But if you have something rare. They don’t know how to handle it! The doctor’s in my area just don’t know what to do! Duke is going to be the only option now. I’m not wasting my money anymore going to these other hospitals in my area.
And then I wonder if Duke is going to be any better! It is a research hospital but just wonder how well they really are at diagnosing CIDP or other rare diseases that cause CIDP.
And then I wonder how slow they are at diagnosing. I sure hope I’m not going to have to live like this for 2 or 3 years getting worse or critical and no treatment options. I think that would do me in! Well, I better try and get myself some sleep. Maybe I will get lucky and land a few more hours of zzzzz. Took another sleeper and hope it helps! Hugs