Intro post

Just found this place yesterday. I was diagnosed about 1 1/2 years ago after spending about 4 months or so falling down, losing strength in the arms and legs and telling everyone I was just getting old. I started walking bent over and looking like a 99 year old man with foot slap. Finally the red flag went up and I called my former business partner/ Dr. who saw me walk in the door and asking " what in the world happened?" He got an MRI scheduled right away, then sent me to a Neurologist. She took out a safety pin and poked it on my toe and then went up to my knee, with me responding " I don't feel anything yet". Nerve conduction test showed 95% nerve loss in my arms and legs, thus me losing about 60% or so muscles there as well. She said it was because my Type 2 Diabetes was too high, which I still don't quite believe. I was started on IVIG which quickly threw me into 10K dollars of debt. My son who has MS, mentioned to his Neurologist what I was going through, and they told him they had been looking for 2 years for someone in the area to be put on their experimental drug trial. So I got accepted and have been doing that since then. It has removed 80% of the neuropathy pain, but as everyone has said, it hasn't reversed the damage. I tried the sugar, wheat, soy, gluten free diet which only lowered my blood sugar, but didn't help anything else. Did the nerve stimulation and other therapies at a local Chiropractor which only threw me more into debt. I've read enough on here so far to see that I'm not the only one trying everything in sheer desperation to reverse the damage. So I'm walking with a cane or walker. I got AFO braces which keep my feet from dropping as I quit driving for 6 months ( try taking away a mans keys to his car), but now when I lift my legs up, my feet stay 90 degrees to my legs and it is now ok to drive. I know now why I kept falling initially because my feet were folding under me ( broke toes and skinned up the tops pretty bad on the front sidewalk with the first fall).

I was a multi-craft mechanic all my life who could fix just about anything put in front of me, working for McDonnell Douglas Aircraft, Owens-Corning Fiberglas R&D Center and others. Worked as a pipe organ builder doing electronic, woodworking, wood finishing, tuning, assembly of them in the churches, etc. I quit work last March while working for a friend who custom built subwoofers for the home and car stereo business. I got awarded SS Disability 3 weeks after my phone interview ( which they say is unheard of by my SS Disability lawyer I had called), but it took 5 months to get the first check. That wiped out all the savings. I had downsized 1 year previous when my wife lost her big job at age 60 ( they replaced her with her boss's friend who was 30 years old). We bought our house one year ago when I was still working, then we went to living on the disability check which the house payment was 50% of our income. That has proven not to work out, so now we put this house up for sale last week.

So, my biggest struggle is only mental in nature. The biggest mistake in the design of humans is the impossible task to convey the emotional issues we all have to another. The longer I have battled this, the more I realize how capable I was at so many different things. Every time I show/tell my wife how to do repairs, I have a large amount of anger, frustration, depression, and guilt. The first 3 anti-depressants made me feel worse than I was before I took them (Zoloft, Praxil, ?) . Now I started taking Wellbutrin and for the first time in 2 years I caught myself whistling to a song yesterday as I've been a trumpet player most of my life. So there may be hope for me :) I likely lost 50% of you after the second paragraph, but it has been good for me reading up on all your posts about your struggles. I look forward to much conversation with you all.


No you didn’t lose me. I feel for you. I am sorry you couldn’t continue on ivig.

Sorry, but I failed to say that when I got accepted into the drug trial program, it is an IVIG out of Germany and will continue through next year. And I get to have my wife give it to me once a week as she was in the medical field before getting canned.

Not much activity on this forum is there?...bummer