Follow Ups and MRI question

[CoffeeQueen]

Hi all,

Sorry I've posted a bit recently. I had been doing pretty well with managing my symptoms, but this last week has been pretty hard. I feel that emotionally I'm coping well (which is big as I have a long history of depression and an anxiety disorder) but physically I feel like a mess. In the past week I've had three or four days where I just couldn't function well which is a big inconvenience as I am self employed and stay at home with my two young kids.

My question is, have you ever moved up a followup appointment? What made you go in sooner? I tend to be the type that doesn't change things unless absolutely necessary, but at the rate things are going I know I can't wait six months to see my neuro if things keep cropping up like they have this past week.

My other question is about testing. I've had a brain/cervical MRI that were clear. My neck had some spots that my neuro said were typical degeneration for my age. We hadn't discussed doing anything with the spine. Would this just be because most lesions in MS are found in the brain/neck? I thought I read that spinal evidence wasn't as common but perhaps I'm wrong. I just am curious what normal protocol is. I know MRIs are horridly expensive and can take a while, so I am just wondering if he was begin cautious in not ordering one. We'd talked in the summer about perhaps doing an EP test at some point, but he didn't bring it up at my follow up.

I'm considering going to my PCP just to talk with her about things and see what she thinks. I trust my neuro, but I worry about coming off as someone who sneezes and think's they're deathly ill. I want the right answers, but I also want to feel like I can function.

Thanks for any insight you may have.

[hsmaldo]

As far as I know, getting a thoracic spine mri is also part of the work-up because even though it's "not as common," it's still POSSIBLE and needs to be ruled out.

As far as moving up your follow-up appointment, I wouldn't do that just yet, but instead I would call your neuro and tell him (or the nurse) what's going on lately and ask what he'd like you to do. Also ask him about the t-spine mri and see what his rationale for not sending you for one is.

The work up I had initially was this: MRI of brain, c-spine and t-spine, tons of bloodwork to rule out other mimickers, Evoked Potential and finally Lumbar puncture. That all occured within 3-4 months of my intial symptoms occuring.

But my dr said he was going to be very aggresive with it--which he has been and for which I'm thankful!

[SNOOPY]

Hi CoffeeQueen,

Although some Neurologists will do the thoracic spine the most common MRIs for MS is the Brain and Cervical (neck) spinal cord.

Spinal cord lesions can cause symptoms from the point of lesion, down. So, if you have cervical (neck) lesions they will affect a person from the neck down, if there are only lesions at the t-spine symptoms will be only from the back down.

[CoffeeQueen]

Thanks for your responses, hsmaldo and Snoopy.

I too have thought of my neuro as begin fairly aggressive (hence ordering MRIs and a full workup of blood work, considering anything and everything that could mimic MS) so the spine MRI thing made me wonder, but you make a good point Snoopy. I do recall in one of our appointments that he talked about symptoms correlating to where damage is done in the spine. He mentioned having a patient who had leg paralysis who came to see him after years of being told things were all in her head and come to find out, they never did MRIs of her brain/neck and boom, she met all the criteria for MS on his first scan with her.

I have had symptoms the longest in my toes/feet/legs (since '12) but I also have a lot in my hands/face/other areas of my body so perhaps I'll call and just see what he'd like me to do. I had put off seeing a neuro in '12 when I talked to my PCP because it wasn't a big deal to me then and we were wanting to have another baby so I didn't want anything mucking that up.

I suppose I'll try calling and just updating them on how I've been and see what they'd like to do from there. I am hoping he can suggest some treatment that will give relief without medicating though I don't know what that would be.