and what was your experience? My neuro suggested if I met the criteria I could be involved. The good thing is free meds and dr visits and MRIs, the bad thing is I would be an test experiment subject, any thoughts on anyone that has been involved? Or is it like top secret. Lol.
Hi, Christieoo the only experience or the one time I was asked to be involved in a program, I tested positive for something and because of the blood work result I could not be a part of it. When I had to go for the blood draw, they had a certain nurse that had to come with me and the person taking the blood had to give the nurse my blood straight away. I had to sign some papers that I agree for them to test me to see if I could be a part of the study.
It came back positive so I could not be apart of the study anyway.
But anyway I wish you luck that you can be apart of the study, but I wouldn't worry about feeling like you were a experiment subject think of yourself as being one of the chosen few who are about to help change the future. Take care Liz.
Great question! Most difficult to answer.
To participate in a research program is a personal decision. There are pros and cons to each as you pointed out. Before you decide, make certain you have all the information. Check with your medical/life/ltc insurance carriers to ensure participation won't have an impact on your benefits. Most important, discuss with family.
Some studies do not test new medications. These studies research the disease itself and how it affects people with MS and/or family/caregivers.
Accelerated Cure Project for Multiple Sclerosis (ACP) is an organization that is gathering information (blood samples, extensive history) and supplying it to researchers in an effort to streamline projects, assist in funding efficiencies all to aide in finding the cause(s) of MS so that a cure may be discovered.
Whatever you decide - thank you! Best wishes.
My niece is currently in a research program for MS. I have a feeling that I am headed that way soon. Waiting for my blood work to return with info and then hopefully enough to be okay'd for my MRI. (per stupid insurance!) I have acquired even more symptoms she has had since her diagnosis 5 years ago. Her MS is extremely aggressive. They found it odd that she had no family history of MS. Well, it may be that she DOES, it just hadn't shown up yet. (me)
Now it seems to be showing up like gangbusters.
I will find out what I can for you. She is currently on a drug that basically removes all of her immune system. Similar to having AIDS. It is extremely aggressive and has thus far been very successful in reducing her symptoms. But, the obvious concern is her susceptibility to illness.
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