This Is MS Multiple Sclerosis Community: Knowledge & Support

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I might be mistaken but, I think that what Dr. Burt is doing is actually a stem cell transplant as opposed to the stem cell treatments that are available in many locations like China etc. In the transplant procedure, I think they harvest stem cells from the patient, then eliminate the present immune system by means of chemo and then re- introduce the stem cells. This is why the patient must be kept in house - because the immune system is in danger until the new stem cells start reproducing. It is not unlike the bone marrow transplant procedure, as I understand.

Best wishes Msmything! I too tried to participate in Dr. Burt's clinical trial.... filled out their application but was declined as I have not had a relapse in the past year but had some communications with Dr. Francesca Milanetti (sp??).

OK, spent the day in Chicago at Northwestern.
I started with an MRI at 7:30 am. I just had an MRI at my home hospital..where I don't pay co-pays 'cause I work there...2 months ago, 3 new active lesions, so tx with IV steroids.
I was told by NWestern that i needed to have an MRI there because of a 'protocol' that can only be done there.
So, then I occupied myself in the city 'til 2pm for an appt with Dr. Burt.
Dr. Burt swept in, asked me a ton of history questions that I did not have the answer to off the top of my head...dates and such. I kept looking down at the pile of papers he was holding and asking 'didn't my neuro send that?, i was on Avonex at that time, isn't that in the records?' etc etc. So the reply was You are not a candidate for this study....what?
Is not my neurologist aware of your protocols? (they are buddies) Oh yes he is.... Then why am I here? This is a waste of time!
His answer was No it's not a waste of time, now we have your name, and all you have to do is have another relaps in the next 9 months and you're in. Oh good..the 5 that I have on MRI in the past 4 years are not good enough.
I could not help but feel that Dr. Burt should have 'people', like students that would have gone through my records and told me on the phone...we need to have 2 relapses within 12 months for you to be eligible.
Instead the questionnare said, how many relapses have you had since diagnosis?
So, mind you I work only to have health insurance, I make about 800 dollars a month, and am near homeless, will be homeless within about 2 months. I SPENT MY ENTIRE MONTH'S SALARY ON THE CO-PAY FOR THE STUPID MRI.
If they send me a bill for the visit with Burt I'll scream...
Things are not well with me, maybe I'm having a relapse now if they're connected with anger!!!!

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Be kinder than necessary, for everyone you meet is fighting some kind of battle..

Oh...... msmything! I'm so sorry that you had to waste time & money to be told that. I would have been upset as well. I was disappointed that I was declined after filling out the questionaire but I'd have been pissed to go there to hear it. I emailed back and asked why I was declined & it was because I had been relapse-free. I guess I can understand that because it would be very hard to measure improvement in someone like me - wouldn't make their trial look impressive?? I guess the good news is that you have a file set up with them & you never know what happens after their clinical trial???? I felt fairly comfortable with the procedure because 15 years ago, I was a donor for a bone marrow transplant for my brother. I think the procedure is quite similar.
Take care & have hope.... I think 2010 is going to bring very good things for us all. Look for prof8 post. It appears that there is another team of doctors that are looking at Zamboni's theory. That's good news for us all too.
My best,
Deb

omg, so frustrating msm..

i feel like screaming for you! hang tough, something has got to break in this ms mystery!

That is too ridiculous, msmything, all I can say is, maybe you will be better off in the long run not having been their guinea pig. As for the cost of the MRI, I think you should try to apply for financial aid from the hospital itself, for what you paid out of pocket.
That doctor should be more responsible!! Grrrrrrrrrr.

Yeah, ya know the emotional lability they accuse us of...I think we earn every bit of labilty...I was feeling kinda tired and weak, but it did go thru my head that I had the strength of 10 men because I was so angry and disappointed, that I had a flash thought wondering how many people it would take to pull me off this cavalier SOB. But instead I started to cry. Which caused the doctor to race out of the room as quickly as possible, leaving me with a student, resident whatever. She actually tried to be kind, but she has about as much pull as an ant. She promised to call me back definetly by the end of the day. I've yet to hear from her......Northwestern truly has an impressive physical plant. this is the second department I've worked with. The head of dermatology treats my pemphigus, he's a complete idiot or maybe pervert. I tell hime as soon as he walks in the room what type of pemphigus I have, and he still asks if i have lesions on my vagina. The type I have does not attack mucosa anywhere....He's the preeminent pemphigus expert..??..

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Be kinder than necessary, for everyone you meet is fighting some kind of battle..

msmything....

You are funny and quite a wordsmith!! I hear your frustration and I really appreciate your sense of humor!

Deb

msmything - I'm sorry to hear about this too..

Check your PMs though!

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Apologies for my terrible username. I never thought I'd use the forum much when I registered..