I will start off by saying I have not recieved an official diagnosis. MS was something brought up in 2015 after I had an episode where I could not walk properly for close to a month. My legs felt like they were on fire or aching, heavy. They did an MRI found multiple PV Lesions but no other signs. My mobility came back and all was good except for fatigue and weakness. Never put much thought into it.
Then last fall I started having eye problems and very debilitating vertigo, followed by muscle fasciculations, charlie horses, memory problems, tinnitus altered or loss of sensation in limbs or areas of the left side of my face. I even lost my sense of taste and my hearing in one ear for a short time. I aslo began having an intense crushing squeezing episodes from my navel up to my chest and all the way around. Like a boa constrictor is around me. It gets so bad that I can see my tummy pooch out and feel the tension in my abs just below my ribs "my heart has been ruled out". Even since my other symptoms have lessesnd and slowed, this symptoms has stayed almost dailiy for over a year.
I have gradually gotten better over a period of months but I have been left with Ataxia per the doctor, Muscle spacisty in abs and ribs so bad I can't wear a bra or snug pants, center of gravity impairment/vestibular or blanace problems.An additional lesion on my brain but not in a characteristic location for MS, high proteine in my spinal fluid but no OG bands. Neuro says the signals from my brain are not getting to other parts of my body the way they should. But they have no idea why:(
My cervical spine is clear and they said that only cervical lesions can cause the symptoms I am having. I have not had my thoracic or lumbar MRI done yet.
My PCP is not convinced I don't have MS. My neuro "nurse practitioner" is not convinced I do have MS. I am convinced my body is failing and each time I get sick it takes a bit more out of me and leaves me with more permanent problems:(
On a good note I do have an appointment with an actual neurologist on the 5th.
Hi there, I'm glad to read that you're seeing a neurologist soon. I am hopeful that this will get you closer to some answers. The diagnostic process to confirm MS or to rule out MS can be lengthy and complicated. If you have any questions about that, this link may help,
and please know you are welcome to call us at 800-344-4867.
One question is about the mcdonold criteria in regards to lesions. Are people required to have lesions in other places than just the brain? I know I have had two MRIs in 4 years, the first showing several lesions on the brain, the second showed an additional new lesion on the brain.
Does the mcdonald criteria require I have lesions on the spinal cord or optic nerve as well?