....We are unique individuals with different experiences and different ideas on this MS disease.
For the moment, take a deep breath, count your blessings including a supportive fiancé, assemble a medical team of doctors (GP, neurologist, etc.) you trust and can work with. Start your own file of copies of medical test results and read, read, read.
Hi Janekathleen, and welcome! I completely agree with Lyndacarol's entire post and advice above. She's entirely correct that we're all unique, but that also means you'll find a variety of options that may fit right into your situation. I always suggest that the first thing to do is to optimize your health in general with diet & exercise - it can only help.
One quick point I wanted to make is that the tingle when you bend your neck down is
almost certainly Lhermitte's, and may
be due to the lesion on your spine. But like every other symptom, Lhermitte's is NOT exclusive to MS.
I had a severe case of it for at least several weeks about 25 + years ago. Since it was so obvious to me it was a spinal issue, though, I assumed it was due to childhood whiplash incidents, and didn't even go to a doctor. Lhermitte's is the reason I developed my diet/exercise routine, paying special attention to my neck, lost weight, and it worked (or I assumed it did). It soon calmed down to a mild twinge only when I bent my neck WAY down. It has continued gradually
going away for the last 25 years, until in the last year I've stopped noticing it at all.
But I have no idea where mine comes from. My C-Spine MRI 8 yrs ago showed NO spinal lesions, but only cervical spondylosis, which can also cause Lhermitte's sign.
Here's a quick Wikipedia definition:
Lhermitte's sign, sometimes called the Barber Chair phenomenon, is an electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward. It can also be evoked when a practitioner pounds on the posterior cervical spine while the neck is flexed; this is caused by involvement of the posterior columns. Lhermitte's sign is named for Jacques Jean Lhermitte, a French neurologist and neuropsychiatrist. Thus it is incorrect to spell the term as "L'hermitte's sign".
The sign suggests a lesion of the dorsal columns of the cervical cord or of the caudal medulla. Although often considered a classic finding in multiple sclerosis, it can be caused by a number of conditions, including transverse myelitis, Behçet's disease, trauma, radiation myelopathy, vitamin B12 deficiency (subacute combined degeneration), and compression of the spinal cord in the neck from any cause such as cervical spondylosis, disc herniation, tumor, and Arnold-Chiari malformation. Lhermitte's Sign may also appear during or following high dose chemotherapy.
Good luck to you, and I'll just leave you with this - I've apparently had MS for at least 38 years, and I'm still doing okay, even working full-time. Even though my body continually does weird stuff, I've somehow managed to adapt to it year after year. MS is just there and I deal with it.