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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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Hi everyone,
I'm still around - and read the boards daily. I guess I haven't updated because...I dunno...didn't want to flood the boards with the HiCy stuff....not everyone seemed as open-armed about it, I guess.
Anyhow, I'm doing quite well. I have noticed definite symptom relief on a few things...and I hope they are permanent.
I was getting worse EVERY day for 6 months....and so far, now I've had almost a month not only without getting worse - but also feeling better every day!
When I would read people's blogs about their HiCy experiences, most reported immediate relief from some things....and I was more than skeptical, to be honest. I was thinking it was placebo effect, ya know? Good ole power of positive thinking, right?
Well, like I said before - definitely egg on my face. The things that are different for me are things that I don't think I could "will" away or be different or have it be placebo effect.
I have NOT worn/used my fatigue medicine for nearly two weeks. Prior to the treatment (and during and the first 2 weeks after), if I forgot to use this med - after about two hours of being awake, I could NOT hold up my head - my entire body/mind would shut down. It was awful and "painful" in many ways. Even on my off days - when I didn't need to leave my house, I still had to use this med - as like I said, it was definitely painful to have that level of "fatigue". Anyhow - even though I'm not doing a lot these days - I am awake....and without the med, I can hold my head up and I'm not in that agony that I was when I didn't use them before! It's incredible.
I am still quite tired - but again, it's a different kind of fatigue. This is coming from the fact that my body went through the ringer and my immune system is still not back 100% or even near it, so it is to be expected.
I am still going to the bathroom regularly. Again, before treatment, it had been months where I could go ALL day without peeing (sorry if TMI...but you asked!)....and now, I go during the day regularly!! It's incredible. I'm drinking the same amount of water now as I did then. I don't have (as much) pain in my kidneys when I wake up in the morning.
For two weeks now, when I wake up - I can move my hands/fingers - before treatment, they would be in such pain and stiff, it was difficult to get going. Now, more often than not, no problems whatsoever.
I haven't used my cane since one week post treatment. Now, I mostly used the cane for balance and stability....but I never went anywhere without it - even if I left it in the car. Now, I haven't even taken it out of the house. I feel more grounded and less wobbly.
When I saw my neurologist a week and a half ago - I had a NEGATIVE Romberg test (the one where you stand, feet together, eyes closed, and hold your arms out in front of you). Well - that was the FIRST time in 7 months that that has happened! Previously, I would totally wobble and fall over. This time - I had very little wobbliness and didn't lean towards tipping. I could walk heel-to-toe much better, too!
I am experiencing fewer headache, too. Mostly, though, they have gotten bad because I'm not allowed to take any tylenol or advil - so I have to use oxycodone - which I don't want to use regularly - so I have been known to let the headaches get to an unbelievably unbearable amount of pain. I hate that and can't wait till I can use tylenol or advil again. (Can't use them now because #1 my platelet count isn't high enough and also, b/c my other counts aren't high enough yet, these meds can "block" a fever and so I wouldn't know if something was happening. At least that is how I understood it when they told me not to take these things yet!)
I'm not quite ready to say this was my cure - it is too soon - but I will say again - this is the longest period of time I have gone without getting worse - AND I have had significant improvement.
I told myself going into this - that even if I only get two years of "cure" from this - going two years without progression - is all I need - it buys me time, if nothing else. And of course, having symptom/disability improvement is icing on the cake! Also - time will tell how much "healing" has occurred from the damage already done. I haven't been sick that long - and so I guess there is a lot of hope that some of the damage may be healed or reversed. That would be the ultimate....definitely worthy of going off the diet for that piece of cake!!
I tell people now - look, send your records to JH (or one of the other hospitals doing it now) - it can't hurt, it doesn't cost you anything...and you have lots to gain if you're willing to do this. For me - it was a no-brainer. Ha ha....pun intended I guess! I know they are having the most success with RRMS - and possibly with those who haven't been sick as long and who have aggressive forms, such as I had.
I hope this post finds everyone well....
Cheryl - I'm curious - why did your neuro think that you weren't a good candidate for this?
~Keri
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