I don't remember if I've written about it in this blog or not (surely I must have), but I've had Multiple Sclerosis (MS - use google to find the links to Mayo Clinic and the MS Society) since Jan 2002, though there's MRI evidence that I've had it since 1995.
The hallmark of Relapsing-Remitting MS is that (as you might guess) the symptoms can come and go (or they can linger), and I've been lucky enough to respond well to medication so what symptoms I do have generally do not interfer with my life.
With a lot of medical things especially ones that require physical rehabilitation, the more motivated you are to improve, the better. I've had a whole raft of odd symptoms: vertigo, balance issues, slurred speech, sensitivity to heat, numbness in parts of my body, trouble thinking, couldn't see very well for a while and almost all of them I've recovered from.
Things I still have are:
- Depression (may not be an MS symptom but often accompanies it - treated very successfully with prozac.)
- Spascicity of my legs (a maddening one and the one I just had some insight into)
- Leg muscle weakness (I am a gym rat now and it's done a world of good and almost completely gone now)
- Fatigue - A classic MS symptom and I rarely experience it now except when I'm truly tired. MS fatigue is amazingly bone crushing and must be similar to what Chronic Fatigue Syndrome is like. It's almost impossible to explain how overwhelming it is. You can't just force yourself to wake up. While it was at it's worst, I did find that Modafinil (Provigil) worked very well on it. Ironically, I read about this drug in the SF Chronicle and I immediately asked my neurologist about it.
For years, I've been trying to figure out a way to address my legs just needed to move. My neurologist explains that it's not restless leg syndrome as restless leg is an inner psychological impulse to move. In my case there are a bunch of extra signals racing down the sciatic nerve. For a long time all I could do was spend a lot of time stretching which helps but doesn't address the cause. So I've been mentally tracing the nerve path in my head (I've been obsessing on this a while - can you tell?) trying to figure out the origin and if accupressure would help.
I've been trying various positions just to see if that would make a difference. Also I've been trying icing and also dressing warmer. All seemed to help some but no magic bullet.
After years I may have found a solution. I had mentally traced the nerve back to my spine and wasn't sure where to go from there. It finally occurred to me that if RSI wrist pain can originate in the shoulder, then might this originate in the spine further up. Going back to mental nerve tracing I started getting the impression that it was up just above in between my shoulder blades or even higher.
One weird MS symptom I had a long time ago was that when I bent my head forward I would get this numb feeling traveling down my spine. It turns out that I have a large MS lesion on my spine in my neck. I really haven't had those symptoms for a long time, but I started to pay close attention to how I was feeling when I bent my head forward. When I did that my legs instantly wanted to move. Oh really? I held my head level. The impuse died down. I'll have to talk with my neuro. more but it appears that even though the old lesion isn't active anymore, it may have left some scaring which is putting pressure on my spine when I'm in certain positions.
This is huge for me. I may be able to sit through a play or a movie without having to stand up and stretch - long airplane flights may not be so much torture. the spascicity is worse while trying to watch TV on the sofa which is certainly a time when I'm not sitting up straight. tonight I was able to watch CSI without having to stretch.
This is by no means over as there are times when I have to bend my head down, and it doesn't work all the time (like right now), but it's certainly way better that it has been.
I hardly dare to hope as the only way I could cope before was to take a whole bunch of potassium (which honestly does work well).
The body does some amazing things. So does the mind. This is very interesting. Did you ever find out more about it?
Thank you for reminding me that I need to do a follow up entry on it.
Though I need to look up references for L'hermit's Syndrome
Ok so it's lhermitte's syndrome and there are a ton of references so give me a moment to digest.
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