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: