Doctors, specialists, ER, IVIG, YIKES. I have had such a nice long period of time I did not have to go for tests all the time, like I was doing for so many years and got spoiled. So now we begin over again for which I hate.
The IVIG this month landed me in the ER. It has been causing me symptoms of breathing difficulties for which the doctor my rheumy gave me something else to take for five days before the treatment and I did. But by the second day of the IVIG I could feel it. I was breathing hard. By the time I got home I felt like I could not breath hardly at all. I was having such a time, I ended up in the er and blood pressure was 203/90, they treated it like I was just anxious, they did take xrays and that is all, no blood work, no nothing no ekg as for I have a horrible family history of heart disease. They were very nice but really? They gave me two adivans and said it was a typical reaction to the ivig. Well if that was the case, I would have been given steroids or Benadryl. So next day my doctor was called and he said same thing if it was a reaction why did they not treat it as such. HUM> Well my rheumy did give me preds before the ivig and it did help. But felt I could not breathe good for three days after. I did a lot of research and I did read that ivig can over load you with fluid, and cause you to be short of breath. So maybe that is it. But decided that I should see a cardio doc with my family history and my autoimmune diseases I felt it was and is a smart move. But oh I hate to start with another Doctor. Hate it.
So then I made an appointment for a neuro for my Hashimoto's Encephalopathy and small fiber neuropathy a new one, in town. My doc that I love is five hours away and when I was in the er last week I thought about this. What would I do if I needed her. I am going to see how this doctor is what he knows about the rare diseases I do have and just maybe if I am lucky he will be willing to work with my doc in Lacrosse so I can have both I know that is a lot to ask for. But I am hoping.
Then I decided I should go to my primary, for the high blood pressure I had in the er, and have her check my thyroid. Well she just did a TSH I don't know why but that is the only one she did, it came back high normal. Mine with HE is around 1.75 and this came back 3.95 well that is to high for me, with hashimoto thyroiditis too and hypothyroidism, and the HE. So I emailed her and suggested that maybe my thyroid meds should be upped and she emailed me back and said she wants to send me to an endo (Another doctor) GEE. I just don't want to start over again when I know a neuro can watch it with the HE I have. My Lacrosse doctor always did the thyroid panels and controlled my thyroid meds for me.
So I feel like here I go again. I don't like starting off the new year this way. lol
We had sad news today also, a member of our Hashimoto's Encephalopathy group young daughter who has HE passed away yesterday with complications of HE. I am just so sad. So sad. It is a crime that the medical world does not have enough information on this rare disease. Autoimmune diseases in general have not enough attention in the medical world, yet affects many people. More then ever before. This family has now lost this beautiful young lady who had a full life ahead of her.
We are working on awareness we are writing another edition of Understanding Hashimoto's Encephalopathy, one step at a time to bring awareness to the public and medical world. We are still looking for stories of people with HE. So if you have HE, and would like to submit your story, please contact me. We would love to have your story.
We also are setting up a face book support group called "Understanding Hashimoto's Encephalopathy support group" This group is set up to help people who maybe looking for answers or needing information. They do not have to be dx with HE. We just want to support anyone who is out there going through the dx hell.
Once again thank you for reading and supporting my posts.
Susie
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