Connect
← Return to Nerve damage and other issues - no root cause
Discussion
Nerve damage and other issues - no root cause
Spine Health | Last Active: May 9, 2016 | Replies (13)Comment receiving replies
Welcome @doctormetals. I took the liberty of moving your message to the Brain & Nervous System group. I think you may have a better chance at finding people with similar symptoms here.
@kmintx describes a similar issue with muscle weakness and freezing up here: https://connect.mayoclinic.org/discussion/i-have-a-problem-with-my-buttocks-hip-muscles-that-no/
I'm tagging @rabbit10 @johnwburns @bobsconnect @islandhippy to see if they may have something to add given the neurological nature of your symptoms.
Why did you stop Intravenous immunoglobulin (IVIG) treatment?
Replies to "Welcome @doctormetals. I took the liberty of moving your message to the Brain & Nervous System..."
My first rheumotologist I saw 4 years ago, rated the best in state (AZ) many years running, wanted to start me on IVIG, but hit a wall with my insurance company. They required longer Rx treatments (cheaper) alternatives to be ruled out first. I had tried 4-5 different meds with little to no improvement. I had SED rates in the mid to high 90s and she couldn't get them down low enough even taking 80mg of prednisone. I gained 70 lbs in 2 years. I couldn't walk on my own, drive, or work (had to retire). <br />
I eventually changed insurance company and went to Mayo and the rheumotologist there put me on Cell Cept (mycophenalate) and Rituxamab infusions. My condition improved immensely. All my blood/urine work leveled off to normal and reduced my flare-ups. It's been over 18 months. However, every time I change supplemental insurance companies, he has to write a special report to them why I need these medications before they would approve them, even though Medicare would. He's had to do this 3 times already. I'm just waiting for the other shoe to drop when they won't cover my special med at $700 a month and $12,000 per infusion.<br />
You just have to be vigilant and hope and pray as I had to. There are doctors who care and insurance companies out there that will help where they can. I had to depend on my wife for everything. It took over 4 years, 40 plus doctors, dozens of ER visits, and 30 different meds before I finally have a semblance of a life.<br />
Now I have 2 beautiful grandsons under 3 yrs old that I can enjoy my retirement years with little discomfort.
Connect
Thank you for your reply. I stopped the IVIG because of the insurance<br />
company only approved it for 3 months. When I see my prescribing<br />
neurologist I am hoping that he will recommend re-starting with the IVIG<br />
treatment. Insurance companies have not been helpful. Thanks for moving my<br />
message to Brain and Nervous system group.<br />
<br />
<br />
<br />
<br />
--