Hi, new here
 

I already posted a HI on the new members board but wanted to say HI here too. I've been lurking around for a few months.

I'm not yet diagnosed. Been trying to find anwers since Nov. 08 but so far lots of slight abnormalities but my brain doesn't light up like a Christmas tree so the powers that be (MDs) still don't know what is going on.

My PCP thinks MS, my onclologist (I have MGUS) thinks this is MS but the neuro isn't sure...maybe yes, maybe no...more tests to come.

Anyway, just wanted to say hi and to thank the whole community just for being here.

Gaia

Hi Gaia!

Welcome to the board. Test, test and more tests. You'll get an answer!

Take care :)


Niko:cool:

The hardest part for me was KNOWING something was wrong, and going through the process of eliminating possible causes until it finally narrowed down to MS. You've picked a good place to come for support. No matter what you're feeling, there's somebody here who's been there.

Hello! and welcome :hug: um what is MGUS? :confused:

Have you been to the big MS center in Lebanon NH or the big one near Boston? They are amazing folks.

Hang in there.

Hi Gaia! Welcome to NT.

I am glad to see that you decided to post. I wish you the best of luck on all your tests. Please post and let us know how you are doing and how your testing went.

In the meantime, hang in there! :hug:

Welcome Gaia...:hug::hug:

Hi Gaia and welcome to NT!

Thank you all...
 

for the nice welcome. :)

Just got the appt. today for the thorasic/lumbar w/contrast MRI - scheduled for Thursday.
The neuro's NP wanted me to go to see a GI specialist due to muscle spasms in my throat. Also she wanted me to go for neuropsych. testing due to cognitive problems. They didn't give me referals though so I had to call my PCP who nixed both ideas.
He's sending me to a ENT instead. This makes more sense to me since I already had a swallow study and everything was fine.

Dejibo, MGUS = Monoclonal Gammopathy of Unknown Significance. Basically I have a protien in my blood that could lead to cancer. (a very small chance but I get to be monitored for it for the rest of my life).

Thanks again for the welcome :hug:

Gaia

Hey! we are in the same boat. I have a brain glioma. we have been tracking it on MRI and such. My husband got a bit snippy with the MD this last visit, and said "when are we going to finally know what this is?!" and the MD said "you dont want to know what this is." the husband freaked out, and said he was tired of being afraid for the life of his wife. if this is brain cancer, we need to treat it! if not, it would relieve us to know it. the MD said "the only way we will know is if your wife starts having siezures, and or stroke type symptoms, and it forces us to crack open her skull and go get a peice." the husband sat quiet for a min and said "you win! I dont want to know what this is." I sometimes feel like my life is a fragile egg shell. Is it a headache, or a brain tumor! sheesh!

Welcome.

Hi Gala and Welcome to the group! Hope you get some answers soon, one way or the other. Glad you found us. :)