Treatment Or Torture?

I have been through practically every muscle and neuro medication to try to stop the muscle cramps associated with this monster.  Late last summer, I ended up in the hospital with low Vitamin K levels and was quickly admitted for a week.  It was here that I met my newest Neurologist who (after several failed blood tests) landed on the diagnosis of Satayoshi.  She continued to research and found somewhere that A person was helped by getting IVIG treatments every 8-10 weeks.  Since I am finally finshed with school it seemed a good time to try it.  So last fall I went into the hospital for the initial 5 day treatment and was amazed at how great I could move just after the first treatment.  Since then I have been back for another round (this time as an outpatient in the infusion center) and just started it again today. 

 

If anyone else has had these you understand what a pain they can be, especially the following week(s).  I just wish I knew if they were really working or not, but it will not show for a few months.

amwshorter amwshorter
26-30, F
1 Response Feb 22, 2010

Hi, I also have Satoyoshi's syndrome and have been waiting till I just couldn't stand it anymore before I did the IVF I've read where they have had mixed results with this treatment. How are you doing with it? Right now I use visualization, a wheelchair, and emergency pain med intervention. I don't want to get addicted to pain meds or steroids so I'm trying to take this slow. I was finally diagnosed last year and no one seems to know much about it. The spasms sometimes break bones and if I have to go to the ER I have to explain it to them every time! I've actually had them send in a counselor to find out if I'm being abused! It can get frustrating. I'm in college now.. after I finally got a diagnosis I was able to get disability and medicare which has helped enormously. I have a wheelchair for school and shopping and out anywhere and a service dog and a cane for at home. It took a while but I am learning that I can do most of the things I did before I got sick I just have to change how I do them. Anyway.... I would love to hear how the IVF is going. <br />
Thanks,<br />
Sidney