There's only one other person I have ever read/heard describe this sensation...Zee in Portland...and maybe it's just a West Coast MS thing. :-) LOL But it is a sensory issue that DOES seem to come from MS (believe me...I've been looked at for scabies, fleas, rash, dermatitis, etc...there's not a DAYUMED thing on my flesh!) AND seems to be triggered by a change in temperature or pressure to the area(s). So...I thought I'd discuss it here...on an MS blog...and see if there are MORE than two MS souls out there that have experienced this phenomenon.
I first started noticing this sensation not long after I was diagnosed with MS. Initially I thought (just as I wrote above) there was "something" on me...some kind of rash or dermatological issue I would see. But every time the sensation was apparent, NOTHING was apparent on my flesh. It seemed to be worse when it was hot outside and/or my feet were perspiring OR when I wore shoes that gripped my ankles in some fashion...like boots. I would find myself unconsciously DIGGING at my flesh in an effort to scratch the itch out...many mornings I woke up with deep fingernail gouges in my ankles from scratching them in my sleep. Not a pretty sight (of course, I'm really the only one who catches glimpses of my own ankles these days...when I can find them below my gut!)...
I asked one of my first neurologists about the issue...I was told to use Benadryl cream or some other topical ointment to relieve the "itching"...these things only seemed to apply a thin layer of GREASE that coated my feet and ankles, making them no longer air-permeable, and sealing in my own body heat...I simply SCRATCHED the lotions off, usually drawing blood! And, no matter how deep I scratched, the motion did NOT relieve the sensation...as a matter of fact, scratching my ankles/feet only made it WORSE! And then there were/are the "zinging" sensations that accompanied any scratching...as if my skin had developed its own circuitry and was sending out signals that I can only describe as the sensation of stepping down on a foot that has gone to sleep...except THIS sensation was on the TOP of my feet and ankles.
I finally had to stop wearing boots...or anything in the warm, summer months that might cover over my ankles. I made mental notations (stored in the holes of my brain) to deliberately STOP myself from scratching my "itch" whenever I could consciously remember. I tried to keep my feet as cool as possible and learned that if I ran cold water over my feet (when in dire MS ITCH mode), the itching sensation would lessen...for severe episodes, I have even used ice packs...much to the chagrin of my dainty tootsies.
For the most part, I have learned to live with the MS ITCH...although, when it hits me at times I am least prepared for it (like in the living room of a patient who already believes I might be the devil!), it is a curse to live with. I can't throw off my shoes and socks OR run cold water over my feet...this would be frowned upon in my "binez"...I simply have to grit my teeth and bear it...until I can justifiably slip my shoes (and sometimes socks) off.
Over the past year, I have developed a somewhat similar sensation in my left shoulder. This sensation always comes with the "warning worms", however. I will get a tingling feeling in my shoulder blade, which eventually develops into a sensation I can only describe as worms crawling about under the skin of my shoulder...this sensation will finally give way to an "itch"...a bit different sensation than my ankles/feet, but scratching is definitely on the priority list! This might develop over a matter of minutes or even days...always the same sensory pattern...always the same annoyance.
Sooooo...my question to all of you MSer CHEESE readers is this: Got an MS ITCH story YOU'D like to share??? I'm just 'itchin' to know I'm not the only one out there with this issue...
(**Editor's footnote** MS relapse update #57: Still no significant changes in symptomology of this relapse...and, with the discovery my brain is smoldering inside, "we" are considering trying ANOTHER round of IV Solumedrol in hopes of getting me back to full status duty at work as quickly as possible while awaiting to hear if I am approved once again for Tysabri. I am, needless to say, a bit "crabby/bitchy/pensive/obnoxious/isolative/sad/moody/angry/lethargic" and taking ALL of this out on my sweet cat and friends...sorry, folks...I DO appreciate your concern, emails, e-cards (Joyce), phone calls, etc...and, if any of you are still around after the Wicked Witch of the West melts, I'll apologize again! If it's any consolation, I've also taken to "E-Yelling" at Dr. She Who Will Not Be Named as well via emails...why should SHE miss out on the fun?!?)