I am not sure how often I will visit this site. I did start a blog and you are welcome to post comments there as well. Best, Courtney

www.reversems.blogspot.com

I am a new member. I was diagnosed with MS 6 or 7 years ago, and I was un-diagnosed 3 or 4 years ago. Dr Dennis Bourdette of the Oregon Health and Science University's MS Clinic looked at my brother's and my MRIs and declare that our respective damages were too symmetrical and too diffuse to be caused by MS. Instead we were diagnosed with an adult onset leukodystrophy (unknown type). This is cause by a genetic condition and was confirmed by the Mayo Clinic when they diagnosed by older sister with the same problem.
To shorted a long story, I am here under false pretenses, but my disease is a myelin disease and my symptoms include (I think) all of the common MS symptoms. I remember well going to a MS support group. Within several months, I had experienced all of my symptoms and kept adding new symptoms for each meeting. After getting some awfully funny looks from the group, I quit narrating my symptoms, and just listened (which I find very hard to do.)
In my heart I still have fond connections to people with MS. It's as if I am a distant, but poor relative of yours. And since adult leukodystrophies are quite rare, I have no other group to belong to, so I plead your indulgence to join in with you guys.
As a side note, the reason I got all my symptoms within a short time. My genetic leuko defect affects my metabolic system which, in turn, causes thinning of my brain's myelin, and once the thinness reaches a threshold level, all the symptoms start, so I didn't have to wait for new damage to appear like you guys do, but got to experience everything at the same time. And as for rarity, my family is at present the only leukos who share the same metabolic problems. So I am one of four. But we willingly accept new members, I promise.
Thanks guys.

Hi all,

Have just found your forums so thought I would sign up and introduce myself.

I am the webmaster and discussion board admin for the Multiple Sclerosis Resource Centre in the UK.(http://www.msrc.co.uk)

I have been diagnosed and then undiagnosed with MS over the past 4 years and am now on my third Neurologist who is starting the process all over again, so having fun

So hi to all, and nice to meet you.

squiffs