I haven't written in a while, nor called anyone. Several reasons...I am just shut down. So much information to digest and then I have been in pain and it is really hard to concentrate.
I will start off with the technical end of things...the medical doctors from Cleveland Clinic. The Neurologist who is the leading doctor in MS got back our final tests. It is not MS. Great news!! Then came all the abnormal tests and I still don't know what it all means. Two of several tests were not normal and the combination of the two tests could suggest called Mitochondrial Disease. There are various types of diseases. He said he will be in contact with the doctor who is the main person for this disease. It is complicated...but, it comes down to the cells in my body. The outer layer of the cell is healthy and the inside of my cells are dying. He calls them the "power pack" which is what gives me all sorts of energy and this disease will eventually take that away and it is a nasty disease. PLEASE PRAY that I do not have it.
Secondly, I showed positive for Microsomal Antibody. The high end of the range is a 5. I was 88. That antibody relates to Immune Thyroid condition. That part I don't understand because I now have my Thyroid under control. I used to have Hyperthyroid and Graves Disease and it went into remission. So, I have had to wait for the Endocrinologist to come back to the Cleveland Clinic so that I can talk to her about what all this means to me. See, that particular Neurologist is now out of the picture, because he is strictly MS. But, he is going to consult with the Doctor who heads up Mitochondrial Diseases. The endocrinologist now will handle the Immune Thyroid Disease. Then, the other test that came back abnormal was something called Methylmalonic Acid. That one was really high. He said since my B12 was above average...he didn't worry about it. Had it been low, then it would be indicative of a small stroke along the way. I asked the Internist who also showed me my B12 being really high and asked how that was possible. Because I have to get b12 shots every 3 months and I had not had one in 9 months. He said that it will go really high when you have an infection in your body. Well, I had a raging UTI/Kidney infection. At the time, I did not know I had an abscess in my tooth. I truly thought it was a part of my migraine and knew that my tooth hurt some. But, had no idea that I had an abscess until I got home.
Then, comes the dreaded "C" word. It was all so clinical. I was talking about it like I was talking about a Project or something. The next steps are looking for cancer. He says if we find it, it will be hidden or within the blood/cells. I have to have a liver biopsy done, because the one or two cysts that I had on my liver last year, has turned into multiple cysts. So, I will have a biopsy. I have to have a Mammogram, and then they are going to do CT scans on my chest, abdomen and pelvis looking for tumors. I have a feeling they will not find tumors. And as I mentioned, blood tests will be run.
I have been on antibiotics for about 5 or more weeks now. Because of so many infections. I think antibiotics are the devil!! They kill your stomach and kill all the good flora (stuff) in your stomach and make it hard to get your immune system back up. I had the root canal last week and at the same time, I had another bladder/kidney problem. I have to selfcatheterize everyday. And (don't read this part if you get grossed out easily) it was becoming extremely painful. I was bleeding really bad. My kidneys were killing me and my bladder was so full that I looked like I am in my 9 month of pregnancy. Blake had to take me to the hospital because the bleeding would not stop. They had to put a permanent catheter in. Somehow, the antibiotics are not working nor is the catheter. My kidneys still are so painful and my bladder/stomach area is HUGE. I will be calling my urologist in the AM. I have a lot of pain walking, so, I try to be as still as possible. Blake is traveling, so, our whole family is at my parents house in their condo. So, that is interesting. They did not want me staying home alone since my blood sugar dropped to the 30's and that is coma/death area.
That is a ton, I know. I will write a seperate email on how this is affecting me (us)emotionally.