tough run in with my neuro's office

[shucks]

I am in the midst of another relapse, just a few months after my last one. My symptoms are mild ON, cloudy headedness, and numbness on my left side. My right side has been numb since January or so, and I'm past hoping for it to get better. up until april or so, I was numb from the chest down on both sides. I got on copaxone in july, and had a relapse in august. The Doctor prescribed a steroid infusion for me, and I got through it pretty quickly (3 weeks or so), and my feeling started coming back in the left side. A couple weeks ago I was feeling great, left side as good as ever, and right side only bothering me a few days a week, even though mostly numb. I had even slowed down coming here due to feeling good. I even went hunting 3x in the last month. Last Saturday morning I woke up with a cold, and come Sunday BAM, Clumsy legs that weigh 300 lbs a piece and cant type worth a damn. I have a trial that lasts 2.5 days, and it just keeps getting worse. Thursday I can't handle it anymore and email my neuro's nurse that I'm in the midst of the relapse. The response I get is a msg from the neuro that she doesn't give steroids more that once in 6 months unless the symptoms are debilitating. Sensory symptoms are not that bad, and I should be glad I'm not like most of the patients who cant walk or function. The reason I post this here is that I have been fundraising and working towards trying to get into Dr. Burts trial come January. The main requirement is 2 relapses in 6 months treated by IV steroids. If The Dr. wont give me the treatment, how do I fulfill that requirement? I'm dumbfounded. I know there are many folks here way worse off than me, and I sound like a whiner, but what does one do? She is 3.5hrs away, but came highly recommended by my PCP (who sent me a letter saying he was retiring at the end of the year unless his patients wanted to pay a 1500.00 a year retainer for unlimited care) and Duke is a very respected medical facility/faculty. This relapse was a a double edged sword, in that it sucks, but would make me eligible.

Any advice?

[Asher]

Shucks, I'm trying hard to figure out what exactly your Q. is? Read George's post on affordable HSCT option. What are you waiting for? There will come a point where damage is only partially, if at all, reversible. Time is not on our side Chuck, and getting there is no guaranty you'll admitted to Dr. Burt's trial. A progressive disease calls for a sense of urgency. I take the liberty to say this only because you post a question. Be well, Asher

[Vikingquest]

Go to Germany? It's a more severe procedure than Burt's but it'll cost half the price.

[shucks]

I am not against using other options, but I want to give treatment in the US a shot first. I have had friends/aquaintances who have had really bad run ins with the European medical system, and, while I am passing no judgement, it leads me to want to run out of options here first. Thanks for your candor Asher, it is always welcome. I like straight forward people. I am a very outgoing guy, and I understand the benefits of this procedure. I want to have it, but something like what happened to Stella was to happen to me, I would not want to be alone thousands of miles from anyone I know unless it was a last resort. NO one would really be able to come with me due to work/life schedules and the sheer length of time. My girlfriend would die to go, but she is a school teacher who would need to keep tabs on our life here. Any advice this subject or on how to handle this Neuro situation would be great.

[georgegoss]

If The Dr. wont give me the [steroid] treatment, how do I fulfill that requirement?

Simple. Get another neurologist. There's no overwhelming medical reason to limit steroid use to one episode per six months. Steroids don't offer any long-term curative benefit, but if not used chronically they also have little downside.

[rusty2]

I tried to get into Dr Burts trial a couple of years ago. I had 2 steroid treatments in a year but still didn't qualify. Just sayin.....

[CureOrBust]

Steroids don't offer any long-term curative benefit, but if not used chronically they also have little downside.

Chronic use of steroids do have some possibly serious side effects, however, not using them have some more serious possibilities; ie brain damage and short term disability. I use them at least once a month (oral, 75mg x 2-3 days, in single doses)

I have had lowered bone density and experienced moon face and temporary sleepless nights when on them. I am all for them, until something better comes along, but just look both ways.

[georgegoss]

I tried to get into Dr Burts trial a couple of years ago. I had 2 steroid treatments in a year but still didn't qualify. Just sayin.....

I'm sorry to hear you were rejected, Rusty. Although I don't know the exact stats, I would bet that it almost certain 99+% of the applicants to Burt's trial are rejected, just as I was rejected in 2008 (because I've never taken steroids that offer no change in the long-term clinical manifestation and outcome of MS). Burt's trial inclusion/exclusion criteria is so absurdly narrow that it's difficult to imagine anyone at all being admitted to the trial. Remember that clinical trials are not designed to help individuals. They are designed to test & prove hypothesis in the context of a population, which is often a shame because HSCT has overwhelming probability to have curative benefit for MS patients with all forms of the disease (RR, SP, PP). It is well known that HSCT works 'best' for rapidly evolving RR cases so the trial restricts patients to this category. No slam on Burt (he's a very good doctor & researcher), but this approach allows him to look like a superstar showing how outstandingly well the therapy works for such cases. Unfortunately in the wake the progressive cases are left behind and untreated. The good news is that once FDA-approved (sometime around 2020, or just after), HSCT will also be available in the US for progressive cases, too.

For Burt's HSCT trial out of the tens-of-thousands of people who apply, they only need to get a very small fraction enrolled. I imagine they don't have to beg for applicants because they can cherry pick the ones they want without having to expend a lot of effort.

This is why I was especially happy to pay for my HSCT treatment outside of a trial. I found three main advantages in going this (non-trial) route:

1. Much easier & simpler to be admitted for treatment.
2. No (50%) chance of being randomized to the control arm of the study and not receiving HSCT.
3. No requirement or need to participate in onerus & lengthy study follow-up participation. Once it's done, it's done.

Just have to pay for the procedure (which is understandably a huge hurdle for most people). So I have been compiling a list of facilities that will provide HSCT outside of a clinical trial. I update this list each time I learn of a new facility willing to perform HSCT. . . .

http://themscure.blogspot.com/2011/06/g ... -have.html

[rusty2]

Well said georgegoss, well said

[shucks]

George sure can tell it. I always appreciate your input. My first choice is still that option, and I'm starting there. Just waiting on January to try to get up there for the consult.


Thanks for all of the advice guys