I am brand new to this group. Nice to meet you. I have read many stories similar to mine.
I have what have been called: basilar type migraines, hemiplegic migraines: I have a left side headache, and associated with this, I also have numbness/tingling along entire right side - face-arm-fingers-leg-toes, leg weak, can't walk properly, can't find words, confused, dizzy, worse with heat - caused by heat.
headache lasts an hour - other symptoms last days to weeks.
also - have all the numb-weak-can't walk-tremors-ringing in ears-fatigue symptoms with no headache at all.
exacerbated by heat and stress and exertion/exercise
To complicate things a bit more - 6 years ago, I broke my neck in a rollerblading accident. (Do not ever go rollerblading with a dog on a leash. It is really fun - but take my word for it. It is not worth it.) I have three fused discs in my neck, and now moderate spinal stenosis, and severe stenosis to the lateral nerves. There was some cord damage in the original accident. Most neuropathy was on right arm hand - C6 distribution.
So - sorry. What is my question, right? I am concerned that I have many symptoms of MS, but both of my neurologists (one is a "headache specialist" the other a general neurologist) have it in there minds that I am a "headache" patient. It seems that is their mindset....and they do not see my symtoms (symptoms) any differently.
I had a very poor quality MRI done about a year ago. (I'm an MRI tech. It was very low resolution and grainy. Impossible to see any thing like a subtle MS lesion).
Any advice on how to raise this possibility with my neurologist? I am pretty shy...and wimpy with my physicians.
Any words of wisdom will be greatly appreciated!!!Thank you.
For what its worth, i think unless your sx's were actually happening long before your fall and resulting spinal injury, then its going to be difficult to convince them that your sx's are not all due to that and could possibly be something additional eg MS. The likelyhood of additionally having MS as well, is probably quite low so not sure how you could go about bringing it up. The only thing i can think of is to request another brain and spinal MRI, on the basis of any notible mobility decline you may have, and bringing up which centre you'd like to get it done at.
Sorry thats all i can come up with, maybe someone else can chime in with their ideas.
there are new theories out there now (do your homework neuros) that hemaplegic migraines are really MS, I got caught with that label back in 1981 and my current neuro said I should have been dx'd then but they did not have MRI, so..........I could have had years of tx.
I agree with Kyle, you need a new neuro and someone good with MS. I'd ask for a new MRI also. There is also a ton of other diseases to rule out, so it may or may not be a long haul.
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