Heads up - I'm starting with a long, boring history for Dr Flanagan first, then a couple of questions. I was going to just post my questions quickly, but decided they needed some history for an explanation. Sorry, but it turns out that I'm so old I have a LOT of history.
Hi Dr. Flanagan,
All my adult life I've assumed that my body's lifelong weirdnesses were due to my many other medical issues. In fact, the main reason I didn't get diagnosed with MS for 30+ years is because I've always assumed that most of my problems were due to a couple of childhood whiplash incidents. And I had always read that whiplash injuries are likely to cause any number of problems later in life. I treated them on that assumption, and my approach usually worked.
Most of these episodes (lots more than I'm listing) were so obviously affected by neck position that I never even bothered to go to regular GPs to have them checked out. When I woke up in a panic (30 yrs ago?) early one morning with my ears roaring, I naturally assumed "it's my neck again." I even managed to quiet it a bit by rearranging the pillow, but immediately made a chiropractic appointment.
The chiro adjusted my neck AND lower back and the noise quickly went away. However, after a few weeks of the exact same adjustments with no new evaluations, I started to develop a limp. So I stopped going.
Years later (20 yrs ago?) I got a severe case of Lhermitte's (didn't know it had a name until I got to MS forums), but, assuming "it's my neck," of course (and with insurance no longer covering chiro), I decided that if I was going to have to drag that leg around the rest of my life I should make it easier for myself. I didn't even consider going to a regular GP – I knew "it was my neck."
So...I switched my entire lifestyle to a healthy diet (lost lots of weight), and strenuous exercise, paying attention to my neck, and it worked. Lhermitte's was gone, and I felt fabulously healthy. I kept getting stronger and healthier. For years. I still use a rolled up towel behind my neck for most floor exercises – from the early chiro's suggestion.
Then...I got a surprise diagnosis of MS, and also HNPP (a hereditary peripheral neuropathy). Since I know my body pretty well, I've always maintained on forums that "It's not always MS...it's not always MS...it's not always MS..."
I often blame mine on HNPP, but seriously, I have never been able to pin a single symptom directly on MS.
My MS is definite, though, and my first set of MRIs (in 2003) showed a brainful of classic (OLD) MS lesions. See my MRIs here: general-discussion-f1/topic16335.html
My MRIs don't show spinal lesions, according to the radiologist's report. But the C-spine MRI also showed plenty of "diffuse, discogenic degenerative change" throughout the cervical and upper thoracic spine. The report also mentions cervical spondylosis, disc bulging, and endplate spurring. It's always been obvious to me that those childhood injuries had a detrimental effect.
So now my 1st question(s) (there will be more later): The short version is, I've been getting bi-weekly massages from a great therapist for a couple of years, but why does my left leg (the MS one) burst into Restless Leg spasms halfway through almost every massage? And, do you have any suggestions to make it stop? Does RLS ever seem to have a cervical cause?
Even though I used to get RLS years ago, I figured out my triggers (mostly food triggers) and nowadays the only
time I get RLS at all is exactly halfway through an otherwise relaxing, hour-long massage, once she starts working on my head and neck. First I wondered about CCSVI... But, it's finally dawned on me that, as usual, it has something to do with my position rather than what the therapist is doing. It's always at the same point in the massage – as soon as she starts working on my head and neck (upper cervical area in general, I guess), but that's also right after I turn over onto my back after my head's been resting awkwardly on a pillow.
We're both stumped about why it happens, but we both just go with it. I kinda lie back and visualize drawing all the bad stuff in my body down to that leg, and then kicking it out through my MS foot. I even manage to doze off between spasms. She's tried being super gentle, tried avoiding certain cervical areas, tried relaxation/visualization techniques, but the spasms almost always come, and massaging my jerking leg doesn't make them stop. Then as soon as the massage is over and I sit up, they're gone. I know she does some craniosacral stuff, but not sure exactly what.
I've often posted about how weird conditions like RLS and Raynaud's are not really MS (or CCSVI) symptoms, and even Lhermitte's is not exclusive to MS (it's not always MS...it's not always MS...it's not always MS
). But even though I know I have other medical issues, I'm starting to be even more convinced that usually
, it really DOES have something to do "with my neck." I'd love to figure out how to finally make it through an entire massage without RLS now that I'm pretty sure where it's coming from.
Question 2. Now that I've begun to identify an even more extensive connection with my cervical problems than I previously thought, I've also been wondering if some of my exercises are contributing to some of my new walking issues (or they may be due to yet another new medical problem). How can I figure out what exercises are the safest and which to avoid?
And...one reason I've not followed this thread much (besides its impossible, unwieldy length (plus I was gone for months)) was because the title was so confusing
; I still don't know what CCVBP is and I have only minor CCSVI-type symptoms.
Thank you for your future advice!
P.S. Here's one of my posts describing my experience with RLS: post83701.html?hilit=RLS#p83701
P.P.S. When I look on the NUCCA website I don't live anywhere near an upper cervical clinic. And I know I don't live anywhere near a doctor for CCSVI testing, treatment, or followup.