For those just joining us, I was dx RRMS 1997, now SPMS. I had CCSVI venoplasty 3x; July 2010 great benefit but it only lasted a week or two, Aug 2010 great benefit for 6 months but then symptoms returned, March 2011 no benefit, veins still open despite symptoms. Yikes. Continuing progression despite many supplements and diets and protocols—though never MS drugs. I went from a cane to a wheelchair outside the house and holding onto the walls and furniture within. I took a chance on stem cells. I had stem cell treatment 6 December 2011 in Mexico www.dromargonzales.com There was immediate benefit (for specifics see my last few blogs and the youtube before and after video http://www.youtube.com/watch?v=yeRBE69CcKg ).
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I'm starting to wear contact lenses again. I had switched to glasses because I had so little energy that putting in contacts used up too much.
How handicapped am I? I can walk unassisted inside the house. I use a shower chair. I hold on to my husband or a grocery cart outside the house for short distances. More than 200 yards I still need a wheelchair . I can't stand still very long, though I can walk a longer time than I can stand. I can do light shopping sometimes, or go out to eat. I still limp and hobble, but I can get around. But I can't pass for normal. If I don't get enough sleep, I'm not nearly as functional, and I'm in the wheelchair.
I'm now exercising twice a day, 20 minutes each time on stationary bike with other exercises in the morning. When I bumped it up to 20 minutes legs hurt but they eased up.
I had hoped that stem cells would be a magic fix. Well, they helped a lot, but I am a long way from recovered. Positive changes: I can again speak on the phone, and think and plan a bit. But moving is still difficult and sometimes uncomfortable. It's not as bad as it was. I would say overall I went from a personal scale of 8 to 9 (with 10 being the worst, death) to a 6.5 or 7 on a good day and 8 on a bad one. Once in a while I get flashes of a 5 or 6. And once in a while I get a good day of a steady 6.
Negatives: I have almost daily discomfort from my shoulders hurting. They get cold at night, internally. I warm them with a heating pad. I think it might be a circulation thing, since CCSVI helped me for a while.
The same: My right side is weak and my right lower leg is cold most of the time, though since the weather is warmer I am warmer. The heel gets cold but the toes and front part or the foot are often warm.
When I get tired I have difficulty talking—getting enough air to speak. Not forming the words, I can do that fine.
I just turned 50. I am that cliché, an older person with health problems. It's getting a little harder to stay motivated to do the exercise and juicing twice a day. I'm not sure I want to do any more interventions, even the next stem cell treatment I had planned this summer.
But every day is different and with the warmer weather comes better spirits. I'm usually fairly cheerful, but also pragmatic. In some ways it's been a tough month. But overall, looking back at where I was and how far I've come, things have improved. It is my 4 month anniversary for stem cells. Exercising twice a day for 20 minutes each time was something I never imagined being able to do before stem cells. And I can walk a little farther than I could before. I couldn't even talk on the telephone before and now I'm in the office a few hours a day. If I didn't have discomfort, and slept better, I'd be happier.
Little miscellaneous things I keep forgetting:to mention that I should document:
I can direct my feet into the pedal loops on my stationary bike more easily. Formerly it would take me a few minutes to get the right foot in. Now it's usually immediate.
I tried eating organ meat a la Terry Wahls, but I couldn't get it down. At least I didn't puke. So now I take 6-8 desiccated liver pills several times a week.
I am taking natural thyroid hormone and it has helped me. I also take low dose hydrocortisone. I also take a shifting galaxy of other supplements. But those two are classed as drugs. I get them from internet pharmacies because I don't like to support the doctor/prescription/Big Pharma culture here in the US. And most of my other supplements can be found on Terry Wahl's clinical trial http://clinicaltrials.gov/ct2/show/NCT01381354?term=multiple+sclerosis+wahls&rank=1
I haven't had night sweats anymore (the sheets stay dry), but I am sweating more normally now. Previously I hadn't really sweated since 2009.
I haven't felt much like attempting to drive recently.
It seems sleep is the make/break ingredient for me. I have been averse to taking too much stuff for sleeping because I wake up groggy. But it seems groggy is better than non-functional. So I've been taking natural remedies. It's still an issue for me.
That's it for now. See you next time.