The Wonderful World Of Limbo

[StormyRenee]

Hello All,
I am a Limbo Lander. I was originally dx with TM and found comfort and support on the TM site. But now the neuro believes I am in that high risk catagory to develope  MS and we had the MS talk.I go back to see him in Feb 10' and will be possibly starting  the injections. I have symptoms from head to toe which  the majority of the folks on the TM site dont have.I also have brain lesions(15) which is somthing else most TMers dont have.So sometimes I feel like I'm just sort of out there by myself. I was happy to find a place for us Limbo'ers where I could find support,comfort and maybe some answers. Wether you are dx' or in my situation it's stll scary as hell.Take Care....

[StormyRenee]

Julie,
Thanks for the welcome.
I guess the milder the TM the greater the chances to develope MS. Then lesions make it even a higher risk. So I'm screwed..LOL...I have found that trying to make light of my situation helps me. Sometimes I have to laugh at myself and the weirdness I experience....
I hope that you are doing well with your treatment.......
Take care,Theresa.....

[StormyRenee]

My neruo contributes the migraines to my brain lesions.But I have spoke to other TM'ers and if they had migraines before they got worse .If they did not have migraines before alot of them do now.I get pretty much the same facial syptoms as you.The twitching,pressure, and all the other crappy stuff. I have not had vision loss just scartoma.  My neuro said it's common to get aura without a headache.I have vertigo, floaters and see things in my peripheral vision that are not there pretty much all the time. Even my tongue/mouth will burn.I will get pain that starts behind my right eye and makes it's way down to my shoulder.It's like a perfect line.He gave me Imetrex it's an abortive migraine medicine. I have yet to take it because I have not had another episode since it was prescribed. But I carry it with me just in case.
By the time my spinal mri was done it was normal. I get weird pains in weird places that I never knew I had . I also get the chest hug from time to time.I itch for no reason. Out of the blue a finger or toe will go numb.I also have alot of cognitive problems.
Please feel free to ask me any thing......
Take Care....

[Sarahsmom46]

Hi and welcome to our forum.  You are certainly in good company here while you progress to a possible MS diagnosis.

I was also originally diagnosed with TM back in May 2008.  A year later,  I was dx with MS as my symptoms and work up pointed in the MS direction more strongly than TM.  

I had been told too that TM can convert to MS at some point, but they never know how long it will take exactly.  It can take months as is my case or even years from what my neuro told me.  I hope you get some answers when you go in February because the last thing anyone wants to happen is for it to progress without treatment.  

Again welcome.  You have found another caring and supportive place here.  

Julie

[Udkas]

Hi there,
I have a diagnosis of TM as well and get severe migraine headaches without so much the head pain but facial numbness, vertigo, stroke like symptoms, pressure behind the eye and I have had complete loss of vision on one occasion.  I seem to get a lot of facial numbness and eye twitching etc.  

I read somewhere that you get migraines too, does your neuro contribute this to your TM?

I have a lot of pain as well,  do you get pain?  Sorry for all the questions I am curious.  I hope you don't mind.  Where are your lesions in your spine?

Thanks,
Udkas