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Posted: Fri Jul 25, 2008 5:12 pm
by pvns2005
Kyle wrote:Thats all well and good, but I'll need another MRI now. Kind of pissed since I sent them one already and now I have to redo it in 6 months
So what if you have to redo your MRI. After Hicy treatment you have to get a MRI every 3 months then go back to Baltimore. Your going to be tested over and over again for two years after HiCy treatment. I don't know about you but I did whatever they wanted and my MS is gone.
This is the follow-up Schedule after HiCy treatment:
HiCy – Schedule of required follow-up tests
A. Blood and Urine Tests - Months 1 to 6 (inclusive) then Months 9, 12, 15, 18, 21 and 24
1. Heme 8
2. PT and PTT
3. Complete Metabolic Panel
4. Urinalysis
5. Urine Culture and Sensitivity
B. MRI - Months 3, 6, 9, 12, 21 and 24
1. MRI brain, cervical and thoracic spine with STIR and FLAIR, pre and post Gadolinium
C. Chest X-Ray – Months 3, 12 and 24
D. Cardiac Monitoring - Month 3, 12 and 24
1. EKG – months 3, 12 and 24
2. ECHO – months 3 and 24
D. Neurological assessments – Months 3, 6, 9, 12, 15, 18, 21 and 24
Chris S.
Posted: Fri Jul 25, 2008 7:27 pm
by RedPenguins
Hey -
First - Chris, I'm not a smoker, nor have I ever been - and they still required me to have the chest xray and pulmonary function test.
Second - tone it down a bit. If I were Kyle - and they made me wait 6 months before meeting me - I'd be annoyed too that I had to have another MRI. Then again, I've only been diagnosed a little over 6 months and I've had 2 so far - b/c I'm staying on top of what is happening in my head!
And you're right - MRIs every 3 months post HiCy - so if you have problems with the MRIs, this might not be best for you! Tho I guess they can't force you to do anything.
Kyle - I hear your frustration - and if you've gone back and read my posts from May - you will see that I was frustrated and upset b/c originally I thought I'd have to wait that long to get in to meet them. I definitely feel for you. I think some of us made it in in the nick of time to get it done this summer. Myself and 2 other people that I met in Balti, all had our consults on the same day...and we all started HiCy within a week of one another.
I hope that they have a cancellation or something so you can get in early. Also, I don't know if it matters, but I told them that I was willing to come out to Baltimore twice if I had to (once to meet with Drs. Kerr & Hammond, and another time to meet with the oncologists). Sometimes the hold up is scheduling and coordinating when all of these people are around at the same time. Then again, I was so desperate, I also told them that my bags were packed and they could call me at 10pm any given night and I'd take the redeye and be at their offices at 7am the next morning. LOL.
Keep us posted - and I won't say something cliche like hang in there - you're obviously already doing that - and I won't tell you to tone it down - b/c I know what it is like to be sitting there and waiting to hear something! I'm with ya...
~Keri
Posted: Fri Jul 25, 2008 7:46 pm
by pvns2005
Well Keri, I tried. I never had this disease candy coated for me over the 11 years I have had it and I am tied of the negative that the people on this post throw at you. I give up. I am just going to focus on my rehab and the people that are interested in HiCy treatment can do what I did. Figure it all out on there own..
Sorry for snapping at you Kyle.
Much love. Peace Out.
Chris S.
HICY / Cognitive improvements
Posted: Sat Jul 26, 2008 12:55 am
by merlin26
Hey, can anyone who has undergone the hicy treatment tell me about whether or not they've noticed any kind of cognitive improvement? With MS on avg a persons IQ is lowered 20 pts. Has anyone done any kind of IQ test prior to HICY and then post hicy and if so could you please give us some detail. Thanks.
Posted: Sat Jul 26, 2008 1:02 am
by RedPenguins
Merlin - where did you get this statistic that one's IQ is lowered 20 points. I'd like to read that.
I did not have an IQ test prior to HiCy - however, JH did do some cognitive testing............actually, just one really - and it was a trippy one about math skills. And I'll tell ya, I told my friends about it - ones without MS - and they could barely do well on it...I think I did better than they did. LOL
I definitely feel a little clearer and less foggy since the treatment...but that could also be because I've not dont much but sit around and rest for three weeks now. Time will tell.
Anyhow, I'd love to see where you got this info from!
~Keri
HICY continued....
Posted: Sat Jul 26, 2008 4:49 pm
by merlin26
RedPenguins wrote:Merlin - where did you get this statistic that one's IQ is lowered 20 points. I'd like to read that.
I did not have an IQ test prior to HiCy - however, JH did do some cognitive testing............actually, just one really - and it was a trippy one about math skills. And I'll tell ya, I told my friends about it - ones without MS - and they could barely do well on it...I think I did better than they did. LOL
I definitely feel a little clearer and less foggy since the treatment...but that could also be because I've not dont much but sit around and rest for three weeks now. Time will tell.
Anyhow, I'd love to see where you got this info from!
~Keri
Hey Keri, I searched for the article again but couldn't find it. I remember reading that on avg over time a person with MS has an IQ drop of 20 points. Ask your neurologist about it. He could probably point you to the publication.
Posted: Tue Jul 29, 2008 8:39 pm
by RedPenguins
Hi Kyle -
I am SOOOO happy for you that you will be getting in sooner. I suspected that might be the case.
As for the high BP - i know someone who just had HiCy and he is on BP meds and it was fine...
As for the heart issues, I don't know if you will be traveling far to get to JH - but if so, maybe you can ask them (or your doc now) to send you for an echo and EKG BEFORE you go - so that they can look at those and see if you're a candidate - this way you don't waste time or money.
Re: the heart issue/BP long term - I think because this is a one-time blast, the effects should not be long lasting - at least from what I'm told.....though if you had to undergo chemo in the future, it does have a cumulative effect. I would suggest emailing Brodsky and Hesdorffer to ask these questions - they would know the answers, not necessarily Kerr or Hammond. I just figure the more you know before you go - you will know if it is even worth your time, $, or effort. Unless you happen to live close to JH!
Keep us posted!! Again, I'm so happy for you!!
~Keri