I have CRPS Type 1, that originated in my right foot- but has spread up to just below my knee. It was the end result of an occult Lisfranc dislocation in August 2010. It's probably good to know that up front.
A 3T mri of my brain shows multiple lesions in the corpus callosum, and other areas, but an LP, and VER came back normal. Yesterday, my neurologist said that it might be my CRPS causing all my trouble. Even the "hug"? I really hope this is not CRPS spread, but none of the available options look very good to me...
Positive: tingling, pins and needles, hypersensitivity, fasciculations, spasms, cramps, burning- feels like a match applied to the soles of my feet. Twitching, and tremors: This happens with new flares and will gradually go away, but can take a few weeks.. With flares, it twitches all over my left side up to my arm. I also had some minor right side problems- but only for about a week this summer, and again this December, that are tapering off now. I also get tremors with excess activity, and if my shower is too warm- this resolves in a relatively short period of time. I get what feels like electric shocks in my lower body. Hard buzzing feelings sometimes (but not often), when I am looking down- but it doesn’t run down my back. With flares, I get dizzy, and have more cognitive issues. This too seems to get better over the course of a few weeks. I have near constant balance issues. I have to hang onto something if my eyes are closed, or I will fall. But I have balance issues with my eyes open too: I stumble very frequently-every day, and I fall a lot too- though not everyday.
Negative: During my most recent flares, my left foot/leg go numb. I only remember profound numbness lasting for a couple of weeks. After that, it was more like it was asleep. I also developed difficulty lifting my leg up at hip level. After the flare in June gradually ended, I still have some trouble with my left leg- toward the end of the day, and when I have been moving around more. (I have a hard time getting my left leg to lift into the car; and I have difficulty getting my left leg to clear the top of the tub, when getting out of the tub/shower we have.) My left arm “went to sleep” too, during my more recent flares.
Things I am not sure how to classify:
FATIGUE!! is the most difficult symptom I face.
**My eye symptoms in June: severe pain with movement lasting several days. Some graying of vision in my right eye. I only noticed the graying when I closed my left eye (during eye makeup application. I found that I could see just fine with my left eye- when applying makeup to my right eyelid. When I switched to do my left eyelid, I had a hard time seeing what I was actually doing. I never had any true vision loss, just pain and graying. I didn’t see an ophthalmologist until it had been well over two months. “By then, everything was normal, except when I looked at the Ishihara plates, red and green looked very “washed out” to me- but I could still make them out. Other colors were fine at the time of the exam. Over the next few weeks, I checked at home for red/green issues, and it slowly returned to normal. In my opthamologist's notes, she says that it could have been a mild case of optic neuritis, but not sure. I do still occasionally see small lights in my visual field, but no headache.
**Bladder issues: Very dark urine, all the time since September 2011. I also have spasticity problems. It leaks easily, and I cannot control it. This has been going on for a long time. At first I thought it was due to my age/ fitness level- but no amount of exercise controls it. In spite of the urgency/incontinence, very little urine was produced. I tested negative for infection at least twice. Oxybutnin has helped tremendously, but I still wear a pad if I am leaving the house.
The history goes back to 2001, with an attack of severe vertigo and both legs shaking violently, and feeling extremely heavy and hard to lift. It took several weeks before I noticed I was back to normal. Up until 2010, everytime I had an attack, it would eventually resolve completely. Although I can remember dysfunction in heat, and with fevers, in saunas, hot tubs-etc. all the way back to the late 90's. With the exception of my right foot/lower leg, and the "hug" that tortures me daily, my left side is definitely worse. My right side sx are much less intense if you discount crps.
The idea that all of this is crps is very scary, but also doesn't really make much sense to me in view of my history.
Can you shed any light on this? I tried to post better details/reports, but it took more space than I can use here.
I can't believe how bad my brain is! I also forgot to add that I was diagnosed with MS in July 2011, and started Rebif in August. Later changed to Copaxone. Due to intolerance of my meds, we were going to switch me to Gilenya. A new doctor had to monitor this though, and he is the one who removed my diagnosis. So right now, I am not taking any dmd's, but I am taking lots of neurontin, zanaflex, and oxybutnin. I also just started another course of oral prednisone.
I apologize again. I have some cognitive/memory issues as well. Bad enough that it's noticeable now.
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