just for the record

[mellowtigger]

I woke up this morning because of cramp in my right calf. Good morning, sunshine! As it died down (shorter lived today than other mornings), I felt a muscle twitch in the calf. I start to suspect that twitches (either persistent or strong ones) while I sleep might be responsible for triggering these cramps.

Last week, I experienced a new phantom sensation.  Once, laying down in bed at night, the sense of contact against my lower back was turned into the sensation of wetness.  (No, T'Reese hadn't piddled the bed.) The next day, as I was on my way to work, I felt the same sensation of wetness in the same area as I leaned back against the seat in my pickup truck.

At home, I'm beginning to lose the accuracy and speed of my touch typing skill. Motor control is as good as ever, but I'm having to take a moment to visually double-check my finger position on the keyboard. The index finger of my left hand has lost enough tactile sensitivity that I don't always know when my finger touches the ridge on the F key that's meant to alert touch typists when their fingers are at "home position".

I'm still generally tired and unmotivated. Caffeine is good for getting through work, even if it is a short shift.

Comments

[hilltop.livejournal.com]

I can relate to phantom stuff. I get the feeling of burning in my foot, I get the feeling of ants or spiders crawling up my leg and man, it makes you crazy when it gets intense.

[mellowtigger]

The taste of cinnamon was the strangest phantom sensation so far, but that (or the metallic taste) haven't happened in many months.

[hilltop.livejournal.com]

I'm doing an odd shift in taste and smell recently. A dead animal smell is not the usual gag inducing smell, now it smells more acidic than anything. Very bizarre.

[kroyd.livejournal.com]

What's going on with you there buddy?

[mellowtigger]

I think multiple sclerosis is still the most likely candidate, but my attempt to get a diagnosis earlier this year was thwarted. I do not, as of February, have any lesions showing in my brain or spine MRI scans. And my B12 is "low-ish". Some doctors tell me it's low enough to show symptoms but others tell me it has to drop more before it's abnormal. *sigh*

Low B12 would explain my low energy/enthusiasm. Low B12 could be explained by my body's attempt to repair MS damage to neuron sheaths. Regardless, though, seeing doctors hasn't accomplished squat for me.

[sunshinenilkcub]

Oh bummer, sorry to hear you are having difficulties with your body. I am going to try out a doctor who is on the autism spectrum, Patrick V Suglia. He's on my friends list on facebook if you want to check him out too.

[mellowtigger]

The symptoms have been building for a long time, but issues accelerated about this time last year. I was disappointed to not receive a diagnosis this spring, so I'd know what to do for either preparation (for what's ahead) or treatment (to delay or prevent it).

I have taxpayer-paid insurance (via MN Care) with UCare. I checked their website, but Suglia is not listed as one of their providers. Otherwise, I'd be interested in trying something like that too.

[sunshinenilkcub]

I just talked to Pat Suglia tonight at the support group and he said he could not bill that kind of insurance. He can bill MN Care that is just plain MN care, but not if it was through a third party like UCare. Bummer. He did say that he does not charge the full fee for people who are on MNCare though.

Anyways, one of my high school classmates who I've reconnected with on facebook has MS in a pretty advanced stage--he's been battling it for 20 years now. I told him about you and he said to "tell them to work hard and fight like crazy, adjust when they are forced to and just keep on truckin..... don't let them lay down and give in to it because it will take advantage of that and then it wins."

If you are interested, I can ask him if he's open to talking to him and asking him questions and getting tips.

What makes you suspect these are MS symptoms?

[mellowtigger]

I still don't have a diagnosis of MS, so questions should probably wait a little while longer. I will have questions, though, as soon as I get a diagnosis.

MS is suggested by:

• progressive neuropathy
• muscle twitches throughout the body
• muscle cramps in the feet and lower legs
• phantom sensations and tastes

MS is not supported by:

• lack of affected areas in brain/spine MRI
• still have full bladder control
• vision unaffected
• only minor neuron sheath damage shown by electromyogram of right leg

I wait a month until I get to see a sub-specialist in neuromuscular problems. If it's not MS, I'm hoping that he'll have some idea of what it might be.

[mellowtigger]

p.s. Thanks about asking about the UCare stuff too.