Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS 2001
Lesion locations (most affected side, if known), number of lesions Lesions on spine (2), Lesions on left and right side and occipital lobe, all together 40+ lesions
MS HISTORY PRIOR TO INCLINED THERAPY
Vertigo (all day, but worse in the morning), foot drop, spacisity (worse on left side), headaches, numbness, weakness of arms and legs,cold hands and feet.
MY HEALTH HISTORY AND CURRENT PROBLEMS :--
Optic Neuritis in 2001, ongoing MS issues - all above problems
GENERAL GEOGRAPHICAL LOCATION:
It would be very useful if you could tell us about your everyday problems, how they affect your life and how and when they first started. I would also like to know where you lived, (Not the address)
a general area description from the time you first noticed your problems will suffice.
For example: River valley or low-lying coastal area, elevated hillside(height above sea level if known)
If you moved what type of area you moved to and if your condition improved or worsened.
What weather conditions aggravate or improve your problems? What is/was your job, did you work in a damp/humid environment, perhaps near a river or in a steamy kitchen, or on a ship or boat.
Have you experienced any changes in your condition due to altitude, Perhaps during a trip to the top of a mountain or to the bottom of a ravine or valley?
MS treatments and results: Avonex 4 1/2 years, Rebif (6 months), Tysabri (17 months), IV IG, Copaxone and IV Infusion Decadron
Number of relapses in the first and second year before I.BT. intervention: 3
EDSS before I.BT. intervention (self-assessed or physician-assessed?): Unknown
FSS before I.BT. intervention: Unknown
Number of relapses since starting I.B.T intervention: 0
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): I am tracking my progress now, but I have been using IBT for 2 1/2 weeks. I am no longe dizzy in the morning. I always thought I was dizzy after sleeping just from tossing and turning, but it looks as it was a circulation issue since I am no longer dizzy after starting this therapy. Spacisity and foot drop are my other major issues and those have deceased as well. They are still there but less severe than they were.
Even if I never get the Liberation Therapy, I can honestly tell you that IBT has made a difference in my life. People tell me I am walking better, I have kess "cog fog"....I will continue to post with updates.
Have you had testing for CCSVI blockage yet: (Y/N) N - scheduled in Seton Clinic May 3
Have you undergone a stenosis procedure (Y/N) N - waiting list at Ameds Centrum in Poland
Do the aches feel as if you have been exercising muscles? If so this is normal for IBT in the first 4 weeks. Muscular atrophy is reversed using IBT more effectively, muscles become denser even without exercise. Tendons and ligaments can tighten up also, again causing aches.
ms relapse is frequently reported to be linked to seasonal changes and I suspect it is humidity that is the culpret. High humidity slows down and can even stop the evaporation from the lungs and skin causing the body to rapidly overheat and induce extreme lethargy.
That is good to know. I've had a problem with my leg the last two days. It doesn't quite feel like spacisity, but my knee kind of jerks backward when I walk. I do make myself go on walks nearly every day. Not always fun, but I think I have to. Think it is tendons tightening up? Would I benefit from an air purifier or a dehumidifier in my room? Can I use my pillow, too? Or are we supposed to sleep without it?
Sounds like nerve pathways opening up to me, this has been reported by a few people over the years and usually indicates more improvements are imminent.
Tendons may well be tightening up too and muscles will become denser over the months, a gradual process that will suddenly become apparent to you.
Using a dehumidifier is a good move if you live in an area that is affected by damp, high humidity like a river valley, close to the coast and sea level or a place where it rains a lot. Seasonal changes are known to be implicated in relapses and I suspect it is the humidity factor that is responsible.
A humidity meter would be a smart move first to determine the humidity in your bedroom at night. These can be purchased for a few dollars, you might find one in a garden centre or a supermarket. Or Ebay Needs to be around 50% or less humidity
Should we sleep with a pillow when using Inclined Therapy?
A: Preferably, yes, Pillows will align the head with the spinal column and this will improve the circulation over laying without a pillow and at the same time support the neck in the correct position when laying on ones side.
However, if you are a stickler for sleeping without a pillow the effects of I.T. should still be felt, but logically a pillow makes more sense.
Another update, it has been, I think, about 2 months of raising the head of my bed 6" and middle 3". I am feeling nothing but fantastic effects from IBT. I seriously was down when I started this. I felt crappy EVERY day. Foot-drop, vertigo, fatigue, spasticity. Now, my days are better. I have problems less. I still have the foot drop but less frequently. I am assuming this will keep improving, but since I am not known for being patient, I think I am getting a Bioness. I am 95% better with vertigo, which greatly improves my day in a lot of ways. Still get the knee thing I talked about earlier, but hoping Bioness corrects that, too. It is probably some old damage done to my CNS and will either not heal, or heal slowly. I have more energy, too - which is making my kids happy.
Speaking of which, my son has Psoriasis. He's 8. So of course, we are using IBT for him, as well. It is helping. He flops all over the bed, so I need to figure out a way to prevent him from going sideways, but it has made a difference. I wanted to take pictures of before and after, but he's kind of sensitive about the Psoriasis, and was embarassed.
So, my first Facebook email to Andrew said, "...you're a genius" and I still feel that way!
Also, I forgot to add, I do agree with the whole concept of CCSVI, which is actually how I heard about IBT. I would get the Liberation Therapy, but since I am in the US, I'd have to go overseas. Not thrilled with the idea of going abroad and coming back here and possibly needing follow up treatment. But, IBT has worked so positively for me, that even when I do have a chance to do the Liberation Therapy, I may just be all better then from the $10.00 purchase I made at the lumber yard!
Thanks for your continued reports. Please excuse my late reply. My son Jason advised not to have every thread showing my name as the last post, which I understand, though it is difficult to leave such important posts unanswered for long.
If you can borrow a dehumidifier to test this theory further, it could prove very interesting reagrding your foot drop. Leave the dehumidifier running in the bedroom for a few nights. Keep a glass of water near your bedside to replace lost fluids. This accelerated effect of IBT was reported by Pauline, a lady from the first pilot project, who reported waking in the morning with no evidence of dropped foot, which had been a problem for many years and was always worse in the mornings. She then experimented by leaving the dehumidifier off or on and confirmed the effect by noting that each time her dehumidifer was working, the problem resolved and when not, the problem was back. This gradually improved over time.
Fantastic results so far but there is definately more to follow