MRI results/being sent back to MS Clinis
 

My latest MRI results show 2 to 3 new lesions. I also had one new one last Spring. So I am up to about 9 lesions in my brain and at least one on my spine. None of them are currently showing active inflammation.

My neuro wants me on a treatment and since the CRAB's and ty have all been ruled out due to reactions, etc. He is pushing cytoxan, which scares me to death. He also mentioned novatrone and imuran. He does not want me in a trial because of the possibility of receiving a placebo treatment. He consulted with a MS specialist that I saw last Spring at Barnes Hospital in St. Louis and said that she agrees with his opinion. But he agreed that I could go see her or someone else for a second opinion.

So I have made an appointment for early January with her; it is the earliest I could get in. I feel so alone in this. I live alone, and I do not really have any family members that can help me make a decision. They all have their own lives and problems and do not live near me. I just want someone to tell me what to do. (Wouldn't that be nice?) I made the decision abut taking tysabri, and that obviously was not a success. At this point I am leaning toward imuran, but I am also going to ask her opinion of LDN. I also asked my neuro about trying copaxone again. The IPIR's did not kill me; they just made my life very unpleasant.

Sorry for the long post; I am just trying to work through this decision. I guess I should just try to focus on other things until my January appointment. A friend is going with me to the appointment, and I am going to ask her if she will sit in the exam room with me. She was with me when I got my diagnosis so I do not think she will mind.

Obviously, I cannot spell clinic!

Oh Barb, I'm so sorry about all of this. :hug: :hug: I can't even imagine what it would be like without my family. You do have us, your NT family! :) Sometimes I think, scratch that, I KNOW I get more MS and emotional support here. I just had an mri yesterday because I'm having more cog problems and the hand tremor is back. I'm probably relapsing even though I'm on Ty. Call me anytime!! I haven't researched any of the other drugs yet so I can't help you with that, but I'm here when you need to talk :).

What about Hicy, like Keri and Chris did . . . have you researched that?

If it were me, I'd try LDN before I did anything more risky. If if works for you, it is a very easy solution.

Good luck in your research on your options, Barb. I know how it feels to be left with "no good options", especially when the disease appears to be worsening. :hug:

Cherie

I am also sorry Barb that you feel so alone. We are here to help you as you need it. I know it doesn't take the place of a physical person but just know we care and will do our best to help. I wish we were closer, I'd go with you. :hug:

My advice is to research each med as much as you can. Maybe start a thread or poll on each one and ask that members give their experiences?

:hug:

:hug::hug: Sorry to hear about the increase in leison load. Hope your friend will go with you into the exam room for your appointment in January.

I also recommend research of the drugs and talking it over with the specialist - especially with all the wacky reactions you've had.

If you need anything, let me know. :hug:

I'm so sorry Barb. :hug: We are here for you. I don't know much about those treatments, but I hope you get one that works well without too many side effects. :hug:

Barb,
I dont have advice..other than research the drug ideas your dr mentioned..so you are well informed before the Jan. apt.

we are here anytime you know!! and we wuv ya...:)

wishing you luck with the choices, maybe start threads about each drug..and ask others to share the experience they have had on them....like someone here mentioned.

hugss and well wishes, sarah