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bmac
09-02-2006, 05:23 PM
haha rather than enlighten you all with my never ending medical journey, I'll give you the best summed up version to this point, and ask for your prayer...

-I have neurofibromatosis type 1. Had it since I was little, usually it's not a big deal, but last year it started causing problems with my hands, then my leg.
-I might have MS, but they still don't know. They still probably won't know for a year. LAME.
-The meds I've been on for a year actually aren't working now, so I stopped. I'm glad about that though...
-I was recently diagnosed with neuropathy, but before it's treated, I need a nerve biopsy done to help figure out how to treat it. Will be done in a few weeks.
-I have a tumor pushing on my spinal cord, luckily it's causing no problems now but it has to be carefully monitored..
-I now might get shipped to Indianaoplis to take part in a study where I'd take a drug that's being developed to treat people like me...hopefully it will stunt the growth of my tumors or shrink them. If it's working after 6 months, I'll stay on it for at least a couple years.

I don't know much about the medicine I could be put on, should I be a part of this study...the less toxic of the two options still kind of scares me, as some of the possible side affects include problems with my heart, blood, and bone density, but I think the chances of that aren't too big because my doc sounded kind of confident...and I think that taking part in this study would be good because I could be part of something that could help sick people all over...I am scared though, and with school started in a matter of days, all of these problems that have just erupted over the last month have stressed me out like crazy and it's already messing up my school schedule...please pray that things run smoothly, and whenever I get updates I'll keep you all informed. Thank you!

NewBeginning
09-02-2006, 05:24 PM
I'll pray for you.

ToddB
09-02-2006, 05:32 PM
since qoutes aren't working for me right now........

this last little thing on the list you mentioned (being shipped off) would get me pretty nervous.......plus, the possible side effects you mentioned of the drugs you would be taking are more life threatening than anything else. :eek:

On a side note we could talk volumes the possibility of your having MS, I have begun to acquire a vast knowledge about this disability due to my client having it but that doesn't necessarily mean you could have it.

bmac
09-02-2006, 05:47 PM
Yeah, it's just hard to diagnose me with MS because I have NF1...so they don't know if some of my problems are from the NF, or MS, or both...they've done a spinal tap, other tests and countless scans over the past several months (at least half a year) and they still can't say if I have it or not but they don't want to rule it out...

I don't have all the info yet on the program in Indianapolis, but since it would be through my clinic to a clinic there and insurance hopefully covers it, I would like to try it if it could possibly get rid of my problems...but not before heavily researching this drug and discussing it more with my doctor and the chances of those side affects, and how often I'd need to get those things checked...

BloodDrift
09-02-2006, 07:15 PM
I'll be praying B :)

bmac
09-02-2006, 08:54 PM
Thanks everyone :)

jafa kree
09-02-2006, 09:29 PM
praying right this moment

ToddB
09-03-2006, 01:51 AM
I would like nothing more than to see you 100 percent without this disease Brittany :) I have been praying for you since you posted about this on the FLA boards a couple months ago :)