I have decided to send a letter to my Neuro for her to have when she comes home from her vacation and gets back to work. I feel it is easier for me to explain in writing then it is for me to try to relay what is going on through her nurses. There is just too much going on. Hope fully I will get a call back within a week of her return although I know she will be so busy catching up.
I left off explaining what treatment options you can have with Hashimoto's Encephalopathy. I myself right now need a treatment and I know it. Today I felt like crap, slept almost all day and I hate that. I feel like I am wasting a whole day of my life. But could hardly keep my eyes open plus my head hurts bad, sinus, who knows. My head will hurt all over and it does not have to be sinus, so it could be due to the H.E. but regardless of what it is, I could not even go swimming today which really bummed me out. I just started for exercise and love it. But it would not have been good today.
My diagnoses of H.E. came after a string of other autoimmune diseases. Right before the diagnoses of the H.E. I was dx with Myositis for which is another very rare autoimmune disease. There are several types that follow under the heading of myositis, but mine is said to be a autoimmune response with no label. I had an elevated CPK test plus an abnormal muscle biopsy. This disease causes muscle weakness of your body. Your legs are so weak as mine was I could not even step up over a curb. To climb stairs was almost imposable. To hold my arms up to wash my own hair was such a chore that I would skip it many days because I just could not hold up my arms long enough to finnish. To think that I just let this happen and did not realize there was something very wrong. How one convinces one self that they are ok, or we just learn to live with limitations and go on day in and day out suffering with out even knowing it. I do not think it is suffering after a while, it is just living.
Myositis also causes extreme fatigue along with other symptoms. So now I had the H.E. and the myositis that causes fatigue and weakness both so it is so hard to tell which one is causing which.
During this time I was also dx with peripheral neuropathy and small fiber neuropathy, inflammatory myopathy. I will just describe the neuropathys in a general way and put both together. My neuropathy problems affect everything in my body. From my scalp to my feet, from sharp electrical type of shock pain to a numbing or burning sensation. It can cause itching, also no temperature control in your body, it can cause incomplete emptying of your bladder. It also can be blamed for diarrhea, drying of skin and hair. It also is to blame for balance issues, eye issues and twitching just to name a few. Lets say I have most of all the symptoms that they list under these neuropathys that come and go at different times. I take Carbamizapine which is an anti-seizure medicine to help control the symptoms. This was diagnosed by and EMG and Nerve conduction test, along with a nerve biopsy.
The myopathy was dx by EMG and a muscle biopsy and my cpk levels. Myopathys are inflammation of your muscles. Which also causes weakness and in my case is progressive I was told.
Well enough for tonight. More later.
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