not doing well

[marymoto]

well was into see my gp about the numbness on the right side of my back thoracic area and the chest tightness gp says this is ms hug and beleives the numbness in my back is caused by the ms he suggested i need to go back to the ms clinic went back to the ms clinic on tuesday saw a intern neuroligist and a different neuro as mine is on vacation learned that i have brainstem demyelination training neuro did a very thorough neurological exam. saw other ms neuro who said i will soon need immune modifying therapy to call back if i get worse and they will arrange the steroids phoned back today as i am worse .now they called back and said neuro ordered spinal mris  so have to be there tomorrow morning. havent had a spinal mri to look for lesions so i am kind of excited about this.

[marymoto]

hi ladies yes that is the same thing i said to my hubby what if i were worse off and did not ask these things.

[jensequitur]

Yup - whenever I'm scheduled for an MRI, I always find out what areas are to be imaged, whether it's with contrast, and what the strength of the MRI is.  I would strongly recommend never to get a .7T MRI (unless it's for something besides MS.)  My neuro scheduled me for a .7T, I found out and called him, because I knew for diagnostic purposes they'd be worthless.  He said "Oh, they'll be fine!"  Well, they weren't fine - they showed nothing.  $200 out of my pocket for a waste of time.

When I started having more spinal symptoms, I did the research myself.  I found a 3T MRI clinic in Dallas, gave the address and telephone number to my neurologist, and told them I wanted to be imaged there.  What do you know!  Several lesions in the spine that weren't picked up before.

My neuro now thinks that I've progressed, because my spine MRI suddenly shows a lot of lesions.  Idiot.

[RedFlame]

Sounds like you were very ticked off because your test wasn't ordered correctly.  Just goes to show you that we all have to advocate for ourselves and stay on top of things.  

Good for you that you didn't back down.

Excellent job!

Red

[marymoto]

hi i think it was a 3t mri they will send the report out in twio weeks as it was quite expenssive to get a copy of the disc it was done right at ubc at first thjey said they were only doing the lumbar and the cervical and so i told them the thoracic is where i am currently numb and am having tingling strange sensations in this same arera i felt very frustrated when i was first in the mri so i was going to go upstirs to the ms clinic and find out who put in the requisiton this way when i was just there and saw the neuro for these isues two days ago so i gfelt very frustrated not the way to be in the mri for one hour. but when i came out they said sorrry it took so long the tech said we did do your thoracic spine as well so i sure felt better after that as i was feeling a bit edgy anyways cuz i was up at 4 am. for the drive out there.

[Ufrustrated2]

hey jens,

ditto on the MRI strength for lesions. once again, just today, i had to find out the VA scheduled my MRI t-sec yearly scan with 1.5T without MS protocol. been there done that.

now to wait and see if the doctor and VA business unit will get it right again.

[Ufrustrated2]

hope all goes well for you and your comeback is quick and uneventful.

[marymoto]

thanks ladies for all of the support i  had my cervical spine imaged,thoracic spine and my lumbar spine all imaged this morning then had iv steroids this evening thanks for all of the support wow the steroids have picked me up a bit but feels funny cuz i still have the issues with balance and walking and tingling so feels like i have a bit more enrgy when i walk but while walking it feels gimpy

[jensequitur]

I think your GP is right - I've had numbness on my back as well as the MS hug, and it turns out I have several spinal lesions.  It's great that you're going to get immune modifying therapy - I would move on that as soon as possible.  

I hope your spine MRIs are on a high strength machine!  3T is best for doing the spine.

[sllowe]

Hi Mary,

Sorry for the downslope. Though it sounds like your docs are making some decision on whats going on w/you, Mary. Been awhile for that, no?

-Shell

[HVAC]

Sorry you are not doing well.

Alex