Well, I phoned the MS Society of Canada today. To ask some questions. I asked the man if what I was about to describe sounded like trigeminal neuralgia. I explained that quite a while before I had gone to my gp, who sent me to my neuro about the pain. The ruled out an allergic reaction to seizure meds, deemed it neuropathic, treated it with anti-seizure meds, and left it at that.
It was a stabbing, shooting pain in the joint of the mandible, that radiated outward, when i began to drink something, sometimes brought on by other things. My lips itched and burned and were numb, as was my tongue, like shingles. My jaw ached, my skin itched, burned and was numb.
The man at the ms society said that was the best description he had heard.
I then described the pain in my legs. Yes, it fit meralgia paresthetica.
"Bilateral? You're right, no it doesn't fit anything but ms. Keep in mind, though that your doctor will have to keep taking mris, lesions may not show up for a time. Your symptoms are consistant with multiple sclerosis, only."
I also described my myriad other symptoms, some so mild, you don't consider them as symptoms. But, I do know I have asked my doc about them all, at one time or another. The weakness, fatigue, fasciculations, eye stuff, bladder stuff, bowel stuff, SENSORY stuff. Pherw , LOL
He agreed, it wasn't anything else.
So, when I go see my neuro after my evoked potentials, I will say, I know what I have that you have treated me for all this time. If it only fits ms, why not treat me like I have ms, maybe slow things down?
Hmmmmm, how much do I want to drive my nice neuro nuts, tho.