On Monday I had the chance to visit another neurologist. What I was hoping to get out of the appointment was advice on how to increase my function and improve day-to-day activities. I was so fortunate to actually have this happen. I left the appointment with a huge sense of optimism. My other neurologist is fabulous - she has done such a thorough job of testing all the possibilities. So, he essentially said he trusted her and agreed that what I have could be several things, but likely they would classify it under hereditary spastic paraplegia for now. Also, apparently he is now testing for new HSP gene mutations. I have previously been tested against the older mutations, but he took blood to test for the new ones. He then went on to discuss ways of dealing with this 'pain in the arse,' as he called it.
First, he prescribed exercise. I try to exercise, but it is super difficult when I can't do most 'regular' exercises and I tire very quickly. But, this time, I am determined. My goal is to exercise 6 mornings a week, doing resistance exercises, doing upper and lower body on alternate days. On the upper body days (which is MUCH easier) I will throw in some elliptical too. Over a year ago a physiotherapist recommended an elliptical for me to get some cardio exercise. So, we got one. Unfortunately, this neurologist said a recumbent bike would be better for me, because I don't have to hold myself up and I can just work on my legs. At this point, we don't have room for another piece of exercise equipment in our 500 sq ft apartment, and I would feel bad buying a bike and just storing the elliptical in my parents basement. So, I think I will try to stick it out with the elliptical for a while and see if I can manage it for longer periods of time.
Next, he suggested I try a "cocktail" that he said based on his research should help protect my spinal cord from more damage. It consists of Coenzyme Q10, Creatine monohydrate, and Alpha Lipoic acid. So, over a lifetime, taking these things twice a day is going to get mighty costly, but at this point I am happy to do anything that will help.
Finally, he suggested I increase my Baclofen dose. Right now I take 5 mg in the morning and 10 at night. He is working me up to 10/10/10 to see if it has any effect. Right now I don't find that the current dose is doing anything. I do hope that I am able to stay alert enough though with the higher dose.
All in all it was so positive. He wants to continue to monitor me, so I have another appointment in 6 months. This is so excellent, because my other neurologist saw me two years apart. I am excited that he feel s that it is worth seeing me more often and helping me stay on top of my problems. I am anxious to see how I do in these next 6 months. He had a machine test my strength, and next time I see him we can very quantitatively look at how my strength has changed. I'm so thankful for the opportunity I had to see yet another neurologist. I'm very fortunate to have wonderful people helping me get referrals to great neurologists, and to have a public health system that means I don't have to worry about the cost.
1 comment:
I was interested to find your blog, as I have a client with HSP, and am looking for possible nutritional interventions. Alpha-lipoic acid is one of the things that looked possibly beneficial, in my own reading. Did the neurologist's "cocktail" prove helpful? I realize this can be difficult to assess in a single case; it would be helpful to contact him as well (if he's seen other cases, he would have a better idea of what may have helped.)
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