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

Hi Squiffs!

Welcome to this side of the Atlantic. You know me better as foggyrose -- no, my real name isn't even rose! However the foggy part is true between the ms and fibromyalgia. Nice to "see" you here.

Hi Squiffy:

What a nasty situation to be in. Having a dx of MS is bad enough but to undx'd is cruel.

Welcome. I usually hang out at Braintalk in the 'check-in for those not yet diagnosed' thread. I have been in limbo for years. Not having a dx is frustrating.

I popped over to your site - quite impressive.

hey Foggy, long time no speak to

Hi Cricket, am used to it all now, it's only a label at the end of the day

Glad you liked the site, keeps me busy with over 3000 pages and growing daily!

Sqiffy, I was in the same situation. Dx'd then un-dX'd with MS. The trouble was the new diagnosis was worse. I hope you have better luck. What was the trouble, why did they undo your Dx. Was it your spinal tap, That contributed to mine. Also my MRI. The damage was too symmetrical, and too diffuse. If those were the reasons they gave you, then we should talk. The other trouble, is that all the closer to naming it is to say it fit into a family of rare diseases. So I went trough testing and more testing. Still no names for it, but I am trying to get admitted to a couple of research centers who want to determine the genetic causes of undiagnosed leukodystrophies. It seems that us unknown leukos are the second largest group of myelin disorders.
I figure researchers have run into a lot of dead ends trying to puzzle information out of MS studies, and now figgure there might be as good or better returns, turning to genetic defects that cause myelin damages. Albee Messing got a large NIH grant for his work on Alexanders Disease, the rarest of the known leukos. The Alexander disease gene plays an important part in myelin repair, and the potential return of solving the Alexander disease puzzle is obvious for a lot of nerve damages folks. In my case, researchers figure that the genetic defect plays a role in interrupting my metabolic process, and this, in turn, causes a thinning of my myelin. This partially reinforced by my symptoms. I have virtually all of the MS symptoms. The strange part is that I got them all within a very short time. As did my brother. Which might show that the myelin thinned to a threshold level which, in turn, resulted in symptoms. My older sister's MRI actually shows more damage than mine, but she has no symptoms. We just accuse her of fatter myelin, and recommend diets to her (a little dark humor).
In the mean time, we are much like you, somewhat amused at it all. There are no treatments, no cures, and I have enough brain damages that I react strangely to a lot of medications. so nobody really wants to prescribe anything for me.
Our amusement, of course, was reinforced by my brother and I being seen by a bunch of children docs, at the Dornberger Childrens hospital in Portland, iin the Metabolic Lab at the chipmunk desk of the hospital. The guy testing us was Dr Grumpy (actually Grompe, a German name). At the same time my regular doctor was a former OB/Gyn whose last name is Lush.

So I was the only guy in the world being seen by a lush of a doctor for a chilren's disease handled by Dr Grumpy at the chipmunk desk.

Sqiffy, I was in the same situation. Dx'd then un-dX'd with MS. The trouble was the new diagnosis was worse. I hope you have better luck. What was the trouble, why did they undo your Dx? Was it your spinal tap, That contributed to mine. Also my MRI. The damage was too symmetrical, and too diffuse. If those were the reasons given you, then we should talk. The other trouble, is that all the closer anyone got to naming it is to say it fit into a family of rare diseases. So I went through testing and more testing. Still no names for it, but I am trying to get admitted to a couple of research centers who want to determine the genetic causes of undiagnosed leukodystrophies. It seems that us unknown leukos are the second largest group of myelin disorders.
I figure researchers have run into a lot of dead ends trying to puzzle information out of MS studies, and now figgure there might be as good or better returns, turning to genetic defects that cause myelin damages. Albee Messing got a large NIH grant for his work on Alexanders Disease, the rarest of the known leukos. The Alexander disease gene plays an important part in myelin repair, and the potential return of solving the Alexander disease puzzle is obvious for a lot of nerve damages folks. In my case, researchers figure that I have a genetic defect that plays a role by interrupting my metabolic process, and this, in turn, causes a thinning of my myelin. This is partially reinforced by my symptoms. I have virtually all of the MS symptoms. The strange part is that I got them all within a very short time. As did my brother. Which might show that the myelin thinned to a threshold level which, in turn, resulted in symptoms. My older sister's MRI actually shows more damage than mine, but she has no symptoms. We just accuse her of fatter myelin, and recommend diets to her (a little dark humor).
In the mean time, we are much like you, somewhat amused at it all. There are no treatments, no cures, and I have enough brain damages that I react strangely to a lot of medications. so nobody really wants to prescribe anything for me.
Our amusement, of course, was reinforced by my brother and I being seen by a bunch of children docs, at the Dornberger Childrens hospital in Portland, iin the Metabolic Lab at the chipmunk desk of the hospital. The guy testing us was Dr Grumpy (actually Grompe, a German name). At the same time my regular doctor was a former OB/Gyn whose last name is Lush.

So I was the only guy in the world being seen by a lush of a doctor for a chilren's disease handled by Dr Grumpy at the chipmunk desk.

Hi Michael,

Thank you for your post, it is a very interesting scenario, will keep this in mind once I see the Neuro again after hey have redone ALL the tests, though I do NOT want another LP as I have already had 2 1/2 (don't ask! )

Today I go to the National Brain hospital in London for a repeat of ALL my EVPs, the first ones done in 2003 showed "Significant Demyelinating Disease", hence I got my Dx of "probable MS" as I have multiple lesions in the brain, also medical history etc,. BUT my LP was clear (evidentally there is a whole sub-group of MSers who have a negative LP)

So I start the whole process again today, they are even seding me to see a Neuro-psychologist next month (oh joy )

cheers

squiffs

LP is negative. MRI shows troubled spots. The second largest group of people with damaged myelin are the undiagnosed Leukos. I've just applied to two research groups who are investigating the genetic causes of undiagnosed leukodystrophies, one at a children's hospital in Washington D.C., the other a study by the National Institute of Health. This is coming after a six year search for a dx, with all sorts of testing, most of which ruled out the known leukos. It might be nice to finally have a name to attach to what I have, but that's all I'll get. There are no medications, no cures. But, to look on the bright side of things, there are also no practicing neurologists to tell me what to do. They just look perplexed and make guesses. Then ask me. I get to be the expert, for once. And having been expelled from nursery school....well, that's a power trip, for sure.
The other thing neurologists do is say, "well, the only time I see that much damage (while looking at my MRI) is on comatose patients." And I am thinking I better pay more attention to the guys in the waiting room

Hang in there, will follow your progress with interest