January 12, 2013
Well I ended up calling my neurologists office today on the advice of one of you fellow HE patients who told me that my symptoms could be another form of a flare of Hashimoto's Encephalitis. Soooooo I decided to take her at her word and advice and called. My doctor is on vacation of course until the end of the month. I asked if there were any openings after that and they said not until March for which I already have an appointment then. So I would have just dropped it, thinking oh well can not be that bad, but the nurse said I should tell her what is going on and she would tell the doctor on duty, for Dr. Santillan, so she did and called me back with in an hour. The doctor prescribed for me an anti hallucinate for me. and I am to call them back next thurs. Well, I do not like this either, I do not have the hallucinations that often and only just started, so hate to take yet another pill. GEE can not remember the name but when my husband picks them up I will add it to this. Here I was complaining because I was afraid of another round of IV infusions out patients but I think this might be worst, can not wait to check out what side affects these cause.
Well to con. where I left off (by accident yesterday). My doctor had dx me with Scleroderma. which is a serious chronic connective tissue disease that can cause death but also can disfigure you. It hardens your skin, your body, your lungs, heart, kidneys, hands, feet, ect. Everything. So he started me on Hydroxychloroquine which is an anti malaria drug, and I started to feel better so with in a couple of months he changed my dx to UCTD with features of Scleroderma. Which I stayed on for about six months but my muscles felt worst, I was getting more fatigue and started to have swallowing issues for which I had two EGDs within six months two dilate my esophagus because I was choking on food. Because my muscle were getting worst my rheumy took me off the Hydroxycloroquine (side affects can be muscle problems) and he started me on Imuran at 150MG a day. But still I was having problems.
I decided to go back to my primary doctor, and tell her about the muscle and the nerve problems I was having in my legs and hands, I knew there was something going on and I just felt nobody was listening to me. (Stress was blamed on everything). The primary doctor checked my reflexes and then asked me if I wanted to start anti depression meds, or see a neurologist, I thought about this and said I want both. Best decision I have made in a long time. I did not want to start on lexapro because of the known weight gain, but I did and it helped me calm down, and the neurologist is the one doctor I say saved my life.
Her name is Dr. Santillan and she is a neurologist she was someone who listened to me, and laughed with me, she was honest with me and helped through an unknown period of my illness.
The first appointment with Dr. Santillan she examined me, read my records, as I told her how my memory was getting bad, my speech was getting bad, my balance was off. I would have episodes that seemed like out of body experiences and end up in the ER. Were of course they said it was stress. But she did not. I would be at work and try to say mirror and kept saying window, or try to talk and say a word and could not get it out of my mouth, it was like there was not enough spit, or my tongue would not work well enough to form the words. ( I was in sales and my job was to talk to people) I was so embarrassed and frustrated. The fatigue was bad, I would walk into walls, could not go through a door way without knocking into the door frame no matter how large the door frame was, I would walk down steps and it looked like I was drunk. I would tip. I had no balance at all. Could not concentrate or sometimes could understand what others were saying, it sounded to me like bla,bla, bla. It was bad and getting worst. Dr. Santillan right away ordered a MRA, MRI, EEG, spinal tap, EMG, and a nerve conduction test, then came the biopsy's of my nerves and my muscle. She dx me first with inflammatory myopathy, which she said was progressive, also told me I had puerperal neuropathy, and small fiber neuropathy. This was the beginning. She started me on Carbamazepine, 4 a day of 100mg each and told me I needed to quit my job or it would be dangerous for me to work. She said with everything you have wrong with you, you would get disability right away. So July of 2011 I did quit my job and applied. I have to say when I walked out of her office I was in a state of shock. I had girlfriends waiting for me that I looked at them and said she told me I am very, very ill, and need to quit working. I could not even think. I knew I was sick but to be told you are very, very ill scares the hell out of you. Trust me on this. The carbamazepine did help with the neuropathy and the seizure type of out of body experience's I had, not gone but better. But I still was getting worst with my word find, and speech and balance issues.
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