My HiCy update!

SandyC · 08-04-2008, 05:38 PM

How wonderful that you did this and have such a great attitude. Your a brave person and we all are rooting for your complete recovery. Hope your doing well and all is OK!

Victor H · 08-04-2008, 07:40 PM

Keri,

I hope that you are feeling well.

Your procedure has been on my mind for a while.

Send us a quick note if you can.

-Vic

RedPenguins · 08-04-2008, 11:12 PM

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

ewizabeth · 08-04-2008, 11:21 PM

Keri,

I'm glad to hear the good report. Have you been able to go back to work? I'm interested in this since I'm on Tysabri and it's working now but... you never know. I hope and pray that this is your magic bullet in the fight against MS.

weegot5kiz · 08-04-2008, 11:25 PM

Keri congrats on the progress and as for the ones who dont want to know about it they can pass this thread up, Please do not stop letting us know, many of us are curious about all sorts of attempts at stabalizing this illness, keep on keeping on, sounds like you are doing real good

starfish · 08-05-2008, 12:03 AM

So good to hear from you, Keri! Its great to hear your updates. I was dx'd at 50 and from what I have read, a later in life dx could mean a better chance for a more progressive form of MS.

So your journey is of great interest to me! So glad you are seeing some improvements, and above all, feeling less pain. I am rooting for your success.

PolarExpress · 08-05-2008, 04:49 AM

WooHoo!!

I'm really happy for you, Keri..Thanks so much for the update!

Ivy2 · 08-05-2008, 12:14 PM

Hope you keep on improving!

Thanks for the update.

SallyC · 08-05-2008, 01:01 PM

This all sounds so promising for you and a lot of others, who may be playing in your ballpark. I am just so darned happy for you..

Keep up the good work and please do keep us updated. This is a good thing..

Jodylee · 08-05-2008, 02:29 PM

Hi Keri

. I'm beyond thrilled for you

. Please inundate us with info

. I, for one, am very interested in how HiCy works out for you and others.

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