My reduced symptoms since HiCy!

A board to discuss Revimmune as a potential therapy for multiple sclerosis

My reduced symptoms since HiCy!

Postby RedPenguins » Thu Jul 24, 2008 12:37 am

Well, I admit - when I would read other people's accounts of how they noticed symptom reduction so soon after receiving the treatment, I was skeptical.

I guess I should have egg on my face now! 8O

So far, I have noticed the following:


- I'm walking much better - no cane. (my balance is better)

- I am able to use the bathroom more (might be TMI, but I wasn't pee-ing very much before - and now I am)

- today I was able to meet someone for lunch - and I sat outside and I WAS OKAY!! Before I went to Baltimore - I couldn't be outside for more than a few minutes before all of my symptoms would flare up (and I'd even lose my vision altogether)

- my vision is still messed up - and double vision close up, but distance vision is not double.

- don't have as terrible a headache as I did before.

Still have a ways to go - and am still waiting to see how long term these changes are - but for now, I am thrilled at how well I am doing!!

Other than being bald, I really don't feel like I even had chemo. It's actually amazing.

~Keri
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Postby MaggieMae » Thu Jul 24, 2008 6:32 am

Really happy for you. Please continue to keep us informed. I know it helps me to hear how everyone is doing with the treatment - good or bad.
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Postby pvns2005 » Thu Jul 24, 2008 8:13 am

Hey Keri. It's your HiCy partner.
Good to hear of your improvements.

Here is a list of my improvements post HiCy:

Fatigue has diminished.

Heat sensitivity has diminished.

I don't use my cane around the house but I still use it when I go places because my legs are still weak.

Of course I deal with the have energy then it's gone but that is normal post HiCy.

I had a fever I could not break so Johns Hopkins Readmitted me for about three day for a spectrum of antibiotics. As I was in the hospital is when my immune system bottomed out so my MS symptoms were really bad due to the fever for a day then they were gone. Never had a relapse come and go so fast but that's how the HiCy treatment works. You got MS then it's gone.

If you are going to go through the HiCy treatment and are trying to find a place to stay, The inner harbor has allot of construction in the area so this might not be a good area to stay. Keri and I stayed at the Chase Street Properties (Spinnaker, Promenade). The construction was non stop. Plus management tried to get me out of my apartment as soon as they could with no regard for my Treatment and Rehab. It was a big Headache I had to deal with while trying to go through the HiCy Treatment. The management at the Chase Street Properties were borderline harassment. My Lawyer agreed. Keri's stay may have been more pleasant but I could not get management off my back about moving out. Try the Hilton or the Triedmont Park or Plaza.


Chris S.
Last edited by pvns2005 on Thu Jul 24, 2008 9:19 am, edited 1 time in total.
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Postby pvns2005 » Thu Jul 24, 2008 9:08 am

Kyle wrote:That's what scares me is the fever that wont go away and an infection. I am glad you go through it but it had to scared the **** out of you when it was happening.

Right now my main symptom is leg weakness, has your weakness improved at all?


Kyle,
I never had an infection but if your fever does not break in 4 hours you have to call the Johns Hopkins number they give you for the doctor on call and he makes the decision. The antibiotics are just in case of an infection but you get checked for everything. CT scans of the sinuses and chest. This is standard protocol. They make sure you are covered and take very good care of you. my fever went from 100 to 100.7 in four hours. this was due to the growth factor. My fever broke after two hours at the hospital.

I was never discouraged and never scared.

As far as my weakness, it has improved but my energy level is up and down which is normal post HiCy.


Chris S.
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Postby Jamie » Thu Jul 24, 2008 3:58 pm

Kyle wrote:Thats great news!!

I was reading back in the forums and saw mel and Davis had this done. havent seen anything on their progress since treatment. I think mel has a blog somewhere but nothing on Davis. they have remained silent. I am guessing it wasn't succesful for them?


Kyle,

Absolutely not.

Both Mel and Davis are doing fine.

I did write an update post a couple of weeks ago on this very forum!

Mel's symptoms have entirely gone.

The last few days have been hot and she's been working hard and a little blurred vision came back but that went after rest.

See the 'I didn't want to jinx it but....' post on here.

Mel's had a few emails from Marlene (Davis) and she's seems okay too but obviously I don't want to speak for her.
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Postby pvns2005 » Thu Jul 24, 2008 4:24 pm

Kyle wrote:Thats great news!!

I was reading back in the forums and saw mel and Davis had this done. havent seen anything on their progress since treatment. I think mel has a blog somewhere but nothing on Davis. they have remained silent. I am guessing it wasn't succesful for them?


Kyle,
Did you ever consider that the reason the posts stopped for Mel and Davis is because there is no need to post because they are doing good. I promise you that in a couple of weeks you will not hear from me either. Not because I got worse but because I got my life back and don't see the need to come to thisisms.com anymore.

Get the picture???


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Postby prof8 » Mon Jul 28, 2008 12:38 am

Keri -- are you still seeing improvement? If you have time please come post on Neuro Talk and let everyone know how you are doing!! Wishing you the best.
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