IVIG? We will see

Update on it all. Last I wrote I was or had gone to La Crosse Wis for a neurologist appointment. This went well, she ordered an EEG and a spinal tap. The EEG took for every to come back because of her old clinic, does not know how to play nice with others. This is another story for another time. But the two tests came back, ok, but the tremors and the jerking she is thinking is coming from the small fiber neuropathy. Being made worst from the stress I am in at home. (I believe this to be true) but to hard to control right now. My Rheumy still wants and insists on the IVIG, and my Neuro is going to help him to try to convince the insurance companys that I need it. He did say if refused he will have to start me on one of the big gun meds which scares me more then the IVIG does. Nothing really will help with the Sjogrens but I am thinking that in his mind there is either lupus or scleroderma still hanging over me, and with the amount of autoimmune diseases that I keep getting, he feels it is time to use something to hopefully stop them. The IVIG would also help the neuromuscular problem I have the autoimmune colitis, and the HE and also the progression of the small fiber neuropathy. So I pray it is approved, yet I am afraid if it is. But I have heard people say that are getting it, that they can walk better, so I am crossing my fingers, to walk again is a dream.

My Gerd has been so bad lately, a flair or what ever you want to say. WOW been eating tums like they are candy. They help until I eat something else. Stress, stress, stress. Now Cat scan and echo cardiogram next week for the pulmonologist. I do not expect anything negative with this, but with the connective tissue diseases they need to check me out to make sure things are not spreading. 

So happy to say our book Understanding Hashimoto's Encephalopathy is doing so well, getting the word out as we planned. Just such a rewarding feeling to know that we can help others even being disabled ourselves. Hopefully nobody else will feel as lost as we did when we were first dx. There is information now out there for people.

We are making a documentary of the book and how it came about to be, about stories of people who have been dx with HE. Hopefully this will also help educate people about this rare disease.