Multiple Sclerosis (MS) Support Group

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I'm Afraid

JCStormy
JCStormy
I know I've been quiet for a while, but I've been watching and reading, and sending warm thoughts to all of you on forum; even the quiet ones like me.

I'm afraid, though... I've been trying to get into an HSCT test trial. Of course, with that, comes all the research. I look forward to even attempting something that may give me a little hope but... there's this fear.

I know it's a form of chemo, and I know that there will be things I can and can not do for the year after until my immune system finishes rebooting itself. With chemo, the chance is high of losing my hair. I didn't think it mattered or, maybe, I figured I'd be that chance where all I'd get is thinning (I'm a Black woman with hair so thick I need to process it to be able to run a comb through so I'd welcome a little thinning LOL) but not bald. I also fear the whole being sick; well sicker that I am with this MS thing.

I commend this woman her strength: http://www.nicoletteupdates.com/ but I'm afraid.

Thanks for listening/reading. That's all.
HCARD
HCARD
JC I don't know what research you are looking at is, but I had a chemo and steroid treatment for optic neuritis. It was a trial, but it worked great. I could only see light, dark and movement. It was a one time bolus IV. On the bad side I swear I could feel my cells dying for the next two days. To be fair I over react to any med. If you feel the treatment is harming you, you can quit, it's your body. Maybe you will do really well, who knows. Having MS is scary,your already pretty tuff. Keep us updated on how it works. Hugs
marilyn4342
marilyn4342
Stay strong! If you do decide to do this trial, you will have a Doctor and a nurse and a hot line you can call for information. I am currently in a study for SPMS. My nurse is a God send. My study is 3-5 years long. I am at 1 1/2 years currently. You can always drop out if you feel it is not working or making you sick.

Please keep me informed of how you are doing!
marilyn4342
marilyn4342
JC- any updates?
JCStormy
JCStormy
No updates yet. Still afraid and trying to just deal with the wait. I fly to their facility January 18th for evaluation. Half of me is hoping that I qualify for the trial but the better part of me is hoping that this'll turn around on it's own to something tolerable.

Here's hoping, right? :)
ChrissyH
ChrissyH
JC- do worry about the being on a form of chemo. I had been on a chemo-based med for RRMS. The amount of chemo was actually very low. I had no hair loss etc. The only side-effect that bothered me was that when I ate anything but yogurt I would get a metallic after taste. I simply just ate yogurt for several months. I lost so much weight , that I was fine with, my Neurologist however was not fine with it & pulled me off the drug, so now I am back to being a bit heavy.

I think it's great that u r trying to be in the trial.
ChrissyH
ChrissyH
JC -- glad I checked this tonight. I meant to say DO NOT WORRY about being on Chemo!!!!
JCStormy
JCStormy
It's been a while since I've said anything here but here's an update; and thank for all the support you've been giving both here and in PM. I'm waiting, now, to be seen for evaluation to see if they'll even give me the treatment. Well... here as in my first MRI with them is on Tuesday and I've checked into the hotel to pretty much pace (in my head) until then. Still more anxious than afraid, now, though thanks to having things broken down step by step for me.

Still... I'm trying to figure out if I'm anxious to be accepted or anxious that I may not be, or anxious that I will be. LOL What a mess this thing has made of my head. >.
bleedinblue
bleedinblue
You will be alright JC I was on a chemo therapy rutaxin I didn't have any side effects. It was expensive so when I retired and went on medicade it was not covered. Hope things will work out for you stay strong. Chuck
lorrieonline
lorrieonline
Thinking about you, JC - I hope that whatever happens is the very best situation it could possibly be for you.
baywatchkelly
baywatchkelly
I had rutoxin and it was great. Felt good and didn't lose any hair.
JCStormy
JCStormy
UPDATE: Well, I've done the evaluation (MRI and meeting with the doctors) and... still don't know if I make it into the trail. I don't know if that's a good thing or a bad thing, so I keep waiting... and keeping y'all informed. Hopefully, I'll find out by Friday by the time we fly back home.
AusSue
AusSue
Hope you are able to be at peace in whatever way you can to accept whatever the outcome is. On trial or off it.
I use music to relax, some people use meditation, yoga, exercise etc.
where did you go to see if you can go it?
here in Australia where you have to travel o/seas in most cases to go on the HSCT trial.
Good luck with which ever way it goes, & update when you know anything.
CNOELLERT
CNOELLERT
Marilyn,

Would you mind sharing what SPMS trial you are participating in?

I'm looking into various trials for the treatment of SPMS that are on the horizon for a report I'm doing for my MS support group (MS Invincibles) members.

I have a few members who are interested in joining in on SPMS trials.

Don't want to miss any
JCStormy
JCStormy
UPDATE 2:

All that psyching myself up, all that anxiety and, thanks to all of you, finally resigning myself to a possibility of some relief... and having my hairdresser volunteer to track down good wigs or make me one (LOL). All of that for nothing. I didn't get in. Apparently my brain lesions didn't progress much between February 2014 and January 2015 (nevermind the activity/relapse in August 2014), so I don't qualify for their trial. I guess that's a good thing... right?

To me, after all that; which is exhausting by itself, it reminds me of the "kid in the middle" kid-song: To big to be little and too little to be big. Well, I'm too well to be sick and too sick to be well. :P I really don't want to go overseas but I may have to actually consider it. Le sigh.
judi136
judi136
I tried for this research, but was too old.
Good Luck to you JC
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