No man's land...
 

Yep, that's where I am. They keep changing what I have--you might have MS, you don't have MS, you have probable MS and had TM at some point, you do have MS and go on immunomodulatory drugs, you don't have MS and I'm not happy with you going on immunomodulatory drugs and never told you to go on them to begin with, you definitely have MS and can begin them immediately, I don't think that you have MS but think it's TM and I'm not sure that the immunomodulatory drugs are doing you any good so let's repeat an LP and VEPs and oh, hey, neuropsych testing too. :Scratch-Head:

At this point, I'm not sure if I'm male, female, a hermaphrodite, have a neurological disease, can eat, speak, or think rationally without being told I can or cannot, am or are not, or will or will not. At least the radiologists say I have a brain, it's normal, and I can pull out reports and MRI scan films to prove the former statements. :Ponder: But hey, I've been on this rollercoaster for almost 5 years now and have gotten used to the up, down, possible, probable, nope, yep ride--sort of.

No Man's Land. Didn't expect to be back there again. I'm a refugee on an island of uncertainty again. And I get to repeat exceedingly fun tests--LP and neuropsych testing. Bonus!

Sooo..... now I'm on a quest to find out about TM, although I have loads of questions about fitting into that diagnosis snugly.

My name's Gazelle and I got that nickname young, when I could run as fast as one, which is pretty fast if you think about it. If only I could now.

Hiya.

Welcome ,
I see your finding your way around already.:D

Gazelle,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene:hug:

Thanks for the welcome, Jo and Darlene. I'm sure that I'll find this home as it seems like a friendly online community.

G.

Welcome to Neurotalk.
 

Given the controversies over what the proper diagnostic protocols for demyelinating central nervous system disorders are, your story is, unfortunately, not rare.

You'll find a lot of empathetic people to compare notes with here.

First I just want to say Hello and welcome to NT.

I am so sorry that you have had to go through all this.

I was dx'd with TM before I got my MS dx. Hopefully you will get some answers soon!

Good luck on your journey:)

Wow your story sounds eerily similar to what is happening to a dear friend of mine! It would be incredible if it turns out that you are actually that particular friend. Either way, I welcome you and am so sorry you have to experience the dx rollercoaster!! Unfortunately, this type of situation is too common.

Ditto. :D


(Beth just has a way with words. I think she is actually reading my thoughts. ;))

Hello and welcome.

My first dx was TM then within the next year all the other lesions decided to join the party. So now dx'd with MS. Although that first large lesion still likes to bully everyone around from time to time.

Welcome to the party! I don't like rollercoaster's myself as I am deathly afraid of heights! I guess it's a good thing I was dx'd rather quickly and the doc's haven't waivered with my dx.

I hope you get through all the garbage you are going through and one of the docs stick with a dx.

This is a great place to hang around and lots of good resources!

No man's land? Is that b/c you are female? LOL!

Is that a hairy chicken avatar? You need to find a Gazelle....:p

Hiya,
Welcome to neurotalk, if you need anything just ask, I will try and help you if I can.
Take care and thanks for joining neurotalk, it's nice to have you with us and I hope we can help you

Thanks, everyone.

HollyM, it's amazing how many similarities exist in the wonderful, exciting realm of neurological disease. Sorry that you've been exposed to all the joys of it too. Well, if I'm not your dear friend, perhaps I can become one over time. ;) I'm open to new friends.

I would love to ask why there isn't a forum or subforum for TM as it really is something that a number of people with MS present with.

glenntaj, I wish it wasn't so. It irks me that most docs take the McDonald criteria as gospel, page, and verse and not as guidelines as they were intended. But as a wise neurologist I saw said, once you're given the diagnosis you get treated for the diagnosis and other possible causes are often overlooked. And that is why he preferred not to issue a diagnosis unless forced into it. Given his rationale, I was happy to not have a diagnosis at the time. If docs could walk a mile in our shoes....

Beth, Annelee, and Kellijo, I'd love to get into a discussion about TM with you if we can agree on somewhere to have it in the forum. I have loads to learn about it.

Scary when you ID with someone so strongly that they put your words in their posts before you say them!

Loving the partying lesion with one bully lesion visual. :winky:

Flygurl, "hairy chicken"??? Oy vey, you need your eyes checked. Rather a hairy chicken than a hairy hand (and yes, I'm female--ha ha ha.... love the pun). That is an Eagle, something a flying ace such as yourself should recognize.

ali, thanks. I really appreciate that. I have a cute little friend (she's 6) who I call Ali. Your name makes me smile.

I look forward to getting to know all of you, even those with "attitude problems."

Hi gazelle and a big Welcome to NT. Glad to have ya w/us. :)

hi gazelle.

the community fourm feedback has a sticky for docjohn to request new forums. if there is enough of a need ( enough people that will post kwim?) i'm sure doc would make a TM forum.

that's how we got all the fourms we have. :D

Great! I'll keep an eye out and see if there are a bunch of people talking about TM. So far, it doesn't seem like many, but that can change.

I noticed BT doesn't have a TM forum either (I'm trying to think of a whole sentence right now with nothing but acronyms).

I am sure you will come up with something eventually - KWIM!

PS - forewarned is forearmed which is half an octupus. ;)

Gazelle - You say no man's land, I say limbo land.

(We get cabana boys on limbo island and I call dibbs on Johnny Depp lol). :cool:

5 years in limbo and counting.

Good point about not looking for other things, but it helps if they are looking hard enough for something, treating your symptons, and not blowing you off. If you've got that, you can be okay with the not knowing. At least I can. But it took a long time and firing a lot of drs to get here.

We'll be doing a limbo check in on Weds and if you'd care to pop in, we'd love to have you.

Forewarned is four armed and four armed is 1/2 an octopus! Ha, Flygurl, that's MY saying!! :D Gotta love it.

Brain, you're right. All I want is not to be in Area 51. I'll take TM if that's what they think it is. All I want to do is know--to have a name to put with the stupid disease process. KWIM?

Area 51? Don't forget your foil hat.

Good idea. Brand name foil only, of course. Store brand just doesn't keep out as many signals.;)

I only use Reynolds Heavy Duty