Does this sound familiar?

[carrolmcc]

My first thought was: Nervous system storm. I even googled it. Which is how I ended up here. I've been "attacked" by muscle spasms that started in my hip (I've got L4 thru S1 herniated and bulging discs). Then I woke up with a terribly stiff and painful neck (cervical stenosis w/ C4 laminectomy). In addition, I've developed a paralyzing, stabbing jolt of pain at the base of my skull/top of nick. I'm also experiencing increased bouts of sudden choking/throat closing. I had a brain MRI two years ago (memory loss … possibly due to 4MM lacunar stroke). MRI showed "af few tiny bilateral nonspecific focal white mater signal changes consistent w/ old micrangiopathy versus gliosis.
Anybody?

[MSsurvivor22]

This Sounds Very Familiar!

Dear Carrolmcc, I am a newbie on this site like yourself but I am also a member of two other MS sites where I post on the message boards occasionally, mostly read them. M.S. dx was made, for me, in Nov., 2002 and started on Copaxone in Jan. 2003 but my symptoms go back to the 1980’s. I could not have said it better than you just did about “nervous system storms” because I am very familiar with what I call internal lightning storms. In fact real lightning storms literally mess with my head giving me sharp pains in the top and sides of my head, which does not turn into a headache, in fact the pain stops right after the storm passes. My Neuro. Dr. P. says this has to do with the changes in barometric pressure.

True there is very little info on the internet about this subject,(there is not a distinction made between muscle spasms and NERVE spasms) in fact, there is far more about the psychological effects of thunderstorms than about the physical reactions, but trust me, I did read a few posts where other M.S.er’s admitted they are very sensitive to atmospheric pressure. An attack for me can feel like lightning fast pain caused by turning my neck, the vibrations of a car, especially after a long ride, over-doing it with house &/or closet cleaning, a soda machine, a washing machine , vacuuming, riding an escalator or elevator all have at one time or another started up nerve pain. A few months back I had another set of MRIs done (cranial and brain with and without contrast) one week apart and the vibrations from the MRI machine sent me into visible spasms, with my legs, and arms jerking, flaying up and over and out, well, you get the picture. I was so spastic I could not drink a cup of water without spilling it all over myself or get my own clothes back on me without assistance. Very embarrassing! The MRI staff was freaking out, no help there, lol! This reaction went on for over 12 hours and for days afterwards I could barely function. Following a spasm attack, just like with sciatica attacks my muscles are so sore especially in my legs I cry from the pain. I just want to sleep. My Neuro. put me on 10 mgs of Baclofen 2 Xdaily, plus upped my Neurontin from 300mg X 3 daily to 400 mgs 3X daily and this has helped…somewhat.

I too have cervical stenosis and a terminal restriction on the left side of my neck caused by Dystonia. Sometimes a difference in temperature like going from a hot summer day into a highly air conditioned place like a library or a mall or the other way cold and snowy out and into an overly heated café and I will get really harsh stabbing pains in the sides of my head just above the ears, and I cannot even talk when this happens. However, we don’t know what causes that, yet. Swallowing can be difficult at times and if I am eating out with friends I always order something easy to eat like finger food; avoid some of the culprits like string beans or spaghetti and remember not to talk with food in my mouth ( just like mother taught us) and just take it slow.
Doc P. does not believe in talking about centimeter numbers or exact locations of lesions and white matter changes indicated on reports. He tells me I’m the doctor that is for me to worry about and as the patient you have your own job taking care of yourself. You also have the job of taking good care of yourself and yes it can be very scary when you feel like your own body is attacking you. Cut yourself a break Carol, concentrate on any improvements, no matter how small you may have. And of course number one remember that your group of symptoms are yours alone, however, as you can see from my profile that we seem very much alike. Support is always available on here and other sites, even if the answers to your questions are not forthcoming. I hope I’ve helped you somewhat. Good luck.

[Mamabug]

Carroll --

Welcome to MSWorld.

Sounds like you're trying to figure out what's going on with you, regarding your symptoms. You talked about muscle spasms, pain jolts, etc.

And, you've had an MRI. Any dx yet, or are you still waiting? Limbo is hard.

~ Faith

[carrolmcc]

Got a call from my doctor, who said, "everything looks normal."
Luckily, my hospital posts my test results online for me. The report says,

"Several supratentorial white matter lesions are noted. A few of these
are callosal or pericallosal. This increases the likelihood that they
are from a demyelinating process such as multiple sclerosis."

So, what now?

[Pipes123]

It can take a long time for doctors to tell the difference between MS and other things that look like ms.

You could ask the neurologist for a lumbar puncture (spinal tap). That could speed up the process. If that doesn't show anything than a neurologist who is looking for ms will do another mri every 6 months or year until enough new lesions show to meet the 'macdonald criteria' to diagnose ms. Some people never get new lesions and that is a very good thing,for them.