I began limping early in 2001. I only limped after doing .7 miles on the treadmill and I dismissed it as strange but meaningless. However, whenever I reached that .7 mark I could no longer feel or control my right leg below my knee. Nevertheless, I continued to function fairly well without complete sensation and worked out 3 times/week to ensure that. But my walking continued to deteriorate. In 2006 the neurologist decided that I had msi and estimated that I had another 10 years until I would need a wheelchair. He did not anticipate the rapid deterioration that followed menopause.
Now, after about 15 months on CAPi I can once again access and feel the muscles in my lower right leg and other areas that I didn't even know were lacking. My lazy eye has been cured; I can usually button a shirt with my right hand. So it seems as though I have improved. But my walking and my balance is markedly worse than it was 15 months ago.
Today we went to the National Gallery and luckily the guards' heads were turned each of the many times I fell against the wall. The gallery is about 4 blocks long but when I used to lecture there I could walk quickly with the cane. I used to lecture 4 hours straight each semester and my only concern was walking the 4 long blocks from the Metroi and then lecturing. My college students even had trouble keeping up with my NY pace. Not so now.
What's going on? How come I can access the muscles voluntarily but they don't kick in automatically even as they did for the several years that I couldn't feel them? I really dread falling into Daniel's lions' den (a gigantic and priceless painting by Rubens). Is it just a matter of strength or will practice make muscle reactions a habit?
What should I do? At pt they think I'm just fine. I sure don't think so.
Nancy
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PPMSii-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyii; azith MWF. 5 pulses.
I don't have MSi, but I
I don't have MSi, but I know that distraction, unexpected movement in my field of vision, or uneven terrain will make me wobble unexpectedly. If I know the terrain is uneven, or I expect the motion in my visual field, then I'm fine.
Maybe you work right at the edge of what's possible, so when there's additional demand, then there's nothing left? Like people driving with a cell phone that suddenly come to a traffic sign they don't expect.
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Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.
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Hi Nancy, I am convinced
Hi Nancy, I am convinced that such muscle weakness can be chalked up to inflammationi and/ or muscle groups needing glucose. You are still early on in treatment. It may take another year. When I work out on the treadmill, if I don't get enough carbs afterward, I sometimes get aches in my right calf muscle. I think it must be inflammation or the need for fuel. I used to get the same thing on the right side if I used my right arm a lot. But now that is gone.
Also, killing off the cells infected with Cpni will leave a void that must be filled with new cells. Until that happens, muscle groups can appear weaker. This is just my take on it. the same thing must happen with nerve cells.
How is the fatigue problem? Any better?
Hang in there--this treatment is longer than a marathon.
Raven
CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi
Also EBVi and HHV6
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Feeling 98% well and going for 100! Still testing + for Cpni since June '08.CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi. Also EBVi and HHV6 NACi, Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi and Methylation supplementsi
Hi Raven. Yes, my energy
Hi Raven. Yes, my energy seems to be better since I saw the new doctor. She gave me an abxi vacation for a few weeks and that helped a lot and now I am doing a pulse of just 2 pills every 2 weeks. Also, I am taking LDNi. The proof of the pudding will be in a few weeks. Summer has been relaxing but I go back to teaching 4 afternoons a week on Sep. 3.
Thanks for the encouragement. Just wondering whether I was doing something wrong. I mean, shouldn't I be walking better?
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.
Good news about the energy.
Good news about the energy. I also thought my balance would get better the first year-so wrong! It got worse. If you read my blog, I went through a period where my feet hurt and swelled and I was wobbling when I walked. My muscles also felt like when I used them they were out of energy. This went on for a large part of the first year. By the start of the second year it was gone. I had a large population of Cpni in muscles, bones (the lower leg bones--bone pain is the most painful) and joints. About 6 months into treatment my hip joints were so painful that if I sat on the floor I would have to crawl a bit in order to stand up. Previous to CAPi I had a swollen hip joint that made it very difficult to walk. And the same thing with a knee joint. It would come and go. You know, our old nemesis Cpn was setting up house in there.
So hang in there. Do what you have to do to keep on going. I also have to go back to classes in a week. Time to get started working on the syllabii. BTW, you are so lucky to be close to the National Gallery! I love that painting by Rubens.
Raven
CAP since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi
Also EBVi and HHV6
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Feeling 98% well and going for 100! Still testing + for Cpni since June '08.CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi. Also EBVi and HHV6 NACi, Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi and Methylation supplementsi
I agree with Raven. It must
I agree with Raven. It must be an inflammation.There is some return in function already. More improvement has to follow. Balance is not easy to correct. For improvement of the muscle strength "the awesome foursome" are very helpful. B.
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.
Nancy, I hope you get
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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.
Janice, thank you. But if I
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.