IVIG Here I Come

Now whether this is a good sign or a scary sign but it only took days for me to be approved for the expensive treatment of IVIG. I could not believe it when the nurse called me to tell me. I was in Awe. And my Rheumy did it on his own with out the neuros help because they kept playing phone tag so just went ahead on his own.

I was first scheduled to have it this Friday Aug 1, but they called me back a few days later and said they would prefer to have me have my first treatment when my doctor is in the building. He is from Green Bay WI and comes here once a week. So I appreciate that they are being extra careful as I know you can have side affects. /They also said they feel it will take at least four hours maybe more so if I could come early in the morning, again no problem. I have researched IVIG a lot, and also on a Facebook web page for it so I have had a lot of information and help from people who have or are having the same treatment. Again thankful for these sites and these people. Nothing is better then to hear advice from the people who are getting the same thing.

This I hope will help me with my walking, and joint pain, memory, brain issues, weakness. I can not wait to see what it does. I will take a few months of treatment. So right in time for Christmas. lol

When I am having a good day I think, I don't need this treatment, but then like today and yesterday when I can barely move my legs and arms, so much weakness and pain, hip, back, it is bad. Fatigue is awful I think I can not wait.

We are starting to collect stories of HE patients for our Second edition of our book Understanding Hashimoto's Encephalopathy. We are also collecting them from the care givers as they have a very valuable story to tell also. They are the forgotten victims of chronic diseases.

Time to go no spoons today I am already on tomorrows supply not good.

P.S. If anyone who reads this has HE please feel free to submit your story we would love to add it to the book. Just let me know and I will tell you were to submit it to.

xoxoxo to all

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.