Still Wondering...

[ka217]

Hey everyone!

Here's a quick update.  I saw my neurologist again a couple of weeks ago.  We did a repeat MRI of the brain (this time with contrast).  The MRI was unchanged...So, in 6 years all of MRI's have looked the same.  He is convinced that the lesions on my brain are caused from smoking (which I am trying to quit).

However, I still have the dizziness, pulsatile tinnitus in right ear (same side as all of my previous symptoms), fatigue, etc.  

He told me to get this special pillow to put under my neck when I sleep.  And to do some neck exercises...that my muscles in my neck are just really tight and that is probably what is causing all of my problems.  He still does not think this is anything related to MS.

What do I do from here?

I am scheduled for my annual physical with my GP late next week.  I am thinking about asking for a sleep study (possible sleep apnea?), a western blot (just to make sure it's not lyme).  Is there anything else I should ask of her?  I was thinking about asking for an LP...I know that is crazy, but it could point to or rule out a number of things.  

Please let me know what you think!

Kelly

[DawnYM]

Thank you about the info on the pillow, got one by sleep innovations, comfort plus memory foam contour pillow. Last night was the first night I used it, my back between my shoulder blades are tight and my neck is stiff but I'm sure that's going to get better once I get used to it! Hope you are feeling better!!!! Dawn oh, and I'd go for the second opinion and that lp!

[supermum_ms]

Well, i'm a little skeptical about lesions passed off as 'from smoking' wouldn't all smokers or a high proportion of smokers not display the same type of neurological sx, there are millions of smokers all over the world why dont they have ms type sx then? I dont doubt smoking causes a lot of things, so i'm not saying its not possible, but the implication is it cant be ms because you smoke and thats simply fuzzy logic.

I started smoking when i was 11 years old (yeah i know) so thats 30+ years of smoking, thats a lot of years and according to my neuro i only have 1 lesion and a good brain, (leaving aside for the moment that this neuro is an idiot) I still from your neuro's logic should of had more than 1 lession because of the number of years i've smoked, see why i have doubts.

Everything you have said does fit other things apart from MS, Lupus, diabetes and thyroide spring to mind, though i'm sure they've been checked out.

Feel free to ignore me, i'm feeling flat and skeptical of air today lol

Cheers......JJ

[Wobbly]

Hi there.. I have pulsatile tinnitus quite often and it drive me nuts... so I know how you feel about that part.. my GP and Neuro say there is nothing they can do to help.... you would think they could look into it??  

I would ask your GP about your next steps to find answers.. you know your body and how you feel.. keep a record of your symptoms.. a timeline.. OK

let us know what your GP has to say.. I can't say if you should have a LP or not..??

take care
wobbly
dx

[ka217]

The neurologist I am seeing is actually an MS Specialist.  He just doesn't seem worried at all about my symptoms...blaming most of them on my neck muscles.

I have been looking at my two most noticable sypmtoms on the net...dizziness and pulsatile tinnitus.  They usually return with "Intracranial Hypertension".  This occurs in mostly in women in their childbearing years who are overweight.  That's me!  They say one sure way to diagnose this is with an LP.  That's why I asked if I should ask my GP about that option.  This way we could get my opening pressure and test for MS...and I think I read somewhere they can use the spinal fluid to test for Lyme.  

Any thoughts?

[jensequitur]

I would recommend getting a second opinion from another neurologist.  You're too young for your non-specific white matter lesions to be caused by smoking.  Cerebral microbleeds are common in people over 60 who smoke - but you're only 28.

That and your neurological symptoms make me question this neurologist's judgement.

You could go ahead and get an LP, but it doesn't necessarily rule out MS if there's no banding found.

[ka217]

It is a cylinder shaped pillow that goes along the bottom of your normal pillow inside your pillowcase.  I can't remember exactly what the name of it is, but it basically arches your neck while you sleep.

[DawnYM]

Hi there, just wondering what pillow was recomended, my neck is tight alot!!!! Hope your appointment goes well!!! Sorry I'm new here so I'll leave the questions For the m-s perts!!! Lol

[ka217]

Forgot to add...Neuro also did a nerve conduction test on my arms because of the tingling in my fingers.  Said the results were normal.

Whatever normal is these days :)