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. :)

Welcome Gaia :)

I was just curious did they do a work-up for Lupus? Sometimes the symptoms of Lupus and MS are a little similar, and also because you have the MGUS protein in your blood. I guess they did the whole ANA, etc., tests on your blood too? Swallowing issues are common with Lupus too.

Maybe the T-spine and L-spine MRI's will help the doctors decide what is next. They have to rule out so many diseases/disorders before they can label you.

I am glad you joined the group. Let us know how you make out with your tests. Good luck to you.:)

Frustrations and Blessings
 

Hi Gaia! Welcome to Neurotalk! Isn't it frustrating to get caught in the medical system. Rare/non-existant is the individual who can get docs to deviate from their refer and test, refer and test again system. I agree - you will get an answer, but I'm sorry for all the pain you are suffering now. Sounds like husband and doc crossed paths fairly intensely. Recognize your blessing in not being alone in this, and let that cheer you as much as possible. Blessings and Best of Outcomes for You! billie

Dejibo - sorry you have that hanging over you. Do they send you for MRI's often? (hope you are not one of those people who have a problem with the tube). :eek:

I have to just get blood work every six months...but at least the oncologist is cute. :D (don't tell DH I said that) :D

Lady - I've been tested for just about everything...including pregnancy! (I had my tubes tied 19 years ago) and lyme three times.

My LP showed O-bands but the neuro was not looking for MS when she had me get the LP so all the report says is that they are there...not how many and they didn't test the serum.
My EMG says the test shows slight abnormality.
My EEG showed slight abnormality but a 48 hr EEG showed everything was fine.
I have one spot on the brain that could be migraine, could be MS, but it didn't enhance so who knows on that.

I went for the thorasic/lumbar MRI yesterday. I don't go back to the Neuro until October but I will go get the disc with the report on Monday and see what it says.

Take care all and thank you again for the welcome. :grouphug:

Gaia

I had been receiving MRIs every six months for the last two years. We have now decided I only need one per year. I am one of those people that has a very difficult time in the MRI machine. They give me lots of good drugs, let me put on my blindfold, cover me with blankets, and allow me to relax for a minute, before they snapped that cage over my head. I simply cannot watch them do that. That machine freaks me out. I know it is a necessary evil to see if this thing is growing, but that doesn't make it easier to lay down and let them shove me in that tube.

I do hope you get some answers soon.:hug:

hi gaia,

glad you found us. yes, it's familiar. tests and wait, tests and wait.
you're wise to get your CD and report. i learned a long time ago to get copies of dr visits and test results etc. i'm pretty organized now.

i had breast CA last yr so i understand about watching and waiting. for now i'm cured, if there ever is such a thing.

hope to hear more about you.

Dejibo - Glad that the MRI people work with you to help you be as comfortable as possible. I have no problem with the machine but my DH is very clostrophobic (sp?) so I can understand how hard it is to go in there. He needs really happy drugs to even think about it. :rolleyes:
Glad it's down to once a year, does that mean it's stable? Hope so...

NurseNancy - thank you for the welcome. Glad that your CA is in remission. Will pray that it stays that way. :hug:

azoyizes - thank you for the welcome. Yes, the waiting is hard but I have a great support system in my family so that helps a lot.

Blessings to all,
Gaia

Hi Gaia,
Did you go back and get the disc of the MRI's and the report? Did it have any information pertaining to MS on it or any other problems?

Not yet
 

Lady,

I didn't get the MRI report yet.

It is ready for me to pick up but I was having such a bad day yesterday that by the end of work I just wanted to come home and rest. :Zzzz:

I plan on going and picking it up tonight after work.

Gaia

Hi Gaia,

Welcome to NT! I'm glad you're on the road to getting some answers. It's so hard to sit and wait. Let us know what your MRI report tells you. :hug:

and a welcome from me too. late as ever...

;)WELCOME TO NT this site has helped me out so much i have posted many questions and have gotten great answers. And i'm sorry your going though all of that stuff i hope it dont turn out to be ms or anything serious. GOOD LUCK

Hello and welcome.:)

Welcome to NT! I've been absent as of late, but this change to fall is a huge reminder daily with symptoms that I have this crud called MS. ;)

:hug:

Hi again
 

Still no answers. The MRI (as I posted separately before) was clear of lesions.

PCP still says he thinks I will eventually be dx'd with MS. May just take a while.

So...I guess I'll be lurking about here for a while if you all don't mind. :)

Gaia