Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Greetings again, ! You mention: > So many things are the same, although my age seems my barrier > in being taken seriously ... I'm 44. Fortunately, my neurologist recognizes that 'usual age of onset' does not eliminate the possibility of early onset. Regardless of the actual cause ... just manage the symptoms. Doctors will prescribe things based on the symptoms. Such as PT for balance / ataxia problems. Not for MSA problems. > ... it's the pain in my legs and hands that are the biggest. That neurontin should help. It won't cure it. It won't make it go away completely (at least it didn't for me). But it should beat it back into cowering submission! ;-) I still have the tingling and pain, but it's no where near as bad as it is without neurontin. > Interestingly and frustratingly, my equilibrium is taking a beating right > now ... If I look up high or way down from up high, I get really sick. > I remember last year going to a city fair and getting the worst ride of > my life on my all time favorite ride the " Scrambler. " I've never had > height fears like that, but it makes my stomach turn. It was really > disastrous in a multi-level parking garage last month. So I would have > to say it's getting worse. ... Has anybody had these kinds of things > come on suddenly? Yes. That's why I went to a neurologist. You may be developing problems with your cerebellum. That's the MSA-C portion of the MSA. Discuss this over with your neurologist during your next appointment. By the way, don't talk about 'cerebellum' or 'MSA-C' or 'cerebellar dysfunction'. Just describe your symptoms and the impact on your life. So, what do I do to cope with this? First, as balance gets worse, don't be afraid to get a hiking staff. Not a cane. A cane tosses center of balance forward. Bad if you have balance problems. An adjusted hiking staff helps maintain your center of balance. REI and similar stores sell such things. A sample of one: http://www.leki.com/htsierraasfs.html Second, recognize you WILL adjust to this. Some adjustments include knowing some situations will now be very uncomfortable. I now am VERY careful when I use stairs. I fear I will fall down them. A reasonable fear when balance and poor coordination exists. I prefer elevators now. And the Scrambler (also my favorite) is WAY off limits for me now. Sigh! Third, recognize some unconscience adjustments you make tends to decrease your range of motion. Wow! That sounds more complicated than it is. Instead of moving my head only, I tend to move my head and body. I do that to decrease the dizzy / off-balance feeling. Range of motion exercises help me maintain my ability to move freely. So, short term physical therapy can help you learn some of these range of motion exercises, and exercises to help maintain balance as best as possible. Finally, 'use it or loose it' really does apply to balance. Sure, I feel dizzy. The worst time for it is when I arise after staying still. However, it does improve (not go away!) as I move about. Frequent short walks helps more than a single long walk. Frequent exercise of balance and movement helps remind my cerebellum. Sorry for the long note. Hope it helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 JBF, Don't ever say you're sorry for a long note to me. I am the queen of long-winded-ness. You always have so much information for me and uplift me. I know I tend to not write much to anyone because I feel like such a drag sometimes, but it helps me to talk with others with similar Scary to me is the work situation. I feel like I'm leading a double-life right now. One is perfectly healthy and can handle anything that comes my way. The other is falling apart at the seams. I have started just making small comments about forgetting to take my medicine in the morning because I was running out the door late. One lady asked me why, and I just said I have low blood pressure and it helps keep it up. I can still drive, but I can relate to the turning the head and body together routine. I do that too. So glad also that you mentioned the Neurontin and how the symptoms appear if you miss a dose. Me too. I thought I was probably imagining it and I am so gun-shy at mentioning too much to the doctors because if the medicine didn't wear off that fast then I would look the fool and not know it. I did talk with the neuro though about the major change in vertigo and didn't mention any of those words. Boy, the silly putty sure gets shorted these days. Will have to go back to the store and buy a few. Seems like the eggs were full of goo back when, but maybe it's the memory. :-) I have to be thankful that the pain is not too bad that I can fake it at work right now and my balance too. Hope this finds you feeling better today. Re: people in my area >Greetings again, ! > >You mention: > >> So many things are the same, although my age seems my barrier >> in being taken seriously ... > >I'm 44. Fortunately, my neurologist recognizes that 'usual age of onset' >does not eliminate the possibility of early onset. > >Regardless of the actual cause ... just manage the symptoms. Doctors will >prescribe things based on the symptoms. Such as PT for balance / ataxia >problems. Not for MSA problems. > >> ... it's the pain in my legs and hands that are the biggest. > >That neurontin should help. It won't cure it. It won't make it go away >completely (at least it didn't for me). But it should beat it back into >cowering submission! ;-) I still have the tingling and pain, but it's no >where near as bad as it is without neurontin. > >> Interestingly and frustratingly, my equilibrium is taking a beating right >> now ... If I look up high or way down from up high, I get really sick. >> I remember last year going to a city fair and getting the worst ride of >> my life on my all time favorite ride the " Scrambler. " I've never had >> height fears like that, but it makes my stomach turn. It was really >> disastrous in a multi-level parking garage last month. So I would have >> to say it's getting worse. ... Has anybody had these kinds of things >> come on suddenly? > >Yes. That's why I went to a neurologist. You may be developing problems >with your cerebellum. That's the MSA-C portion of the MSA. Discuss this >over with your neurologist during your next appointment. By the way, don't >talk about 'cerebellum' or 'MSA-C' or 'cerebellar dysfunction'. Just >describe your symptoms and the impact on your life. > >So, what do I do to cope with this? > >First, as balance gets worse, don't be afraid to get a hiking staff. Not a >cane. A cane tosses center of balance forward. Bad if you have balance >problems. An adjusted hiking staff helps maintain your center of balance. >REI and similar stores sell such things. A sample of one: > > http://www.leki.com/htsierraasfs.html > >Second, recognize you WILL adjust to this. Some adjustments include knowing >some situations will now be very uncomfortable. I now am VERY careful when >I use stairs. I fear I will fall down them. A reasonable fear when balance >and poor coordination exists. I prefer elevators now. And the Scrambler >(also my favorite) is WAY off limits for me now. Sigh! > >Third, recognize some unconscience adjustments you make tends to decrease >your range of motion. Wow! That sounds more complicated than it is. >Instead of moving my head only, I tend to move my head and body. I do that >to decrease the dizzy / off-balance feeling. Range of motion exercises help >me maintain my ability to move freely. So, short term physical therapy can >help you learn some of these range of motion exercises, and exercises to >help maintain balance as best as possible. > >Finally, 'use it or loose it' really does apply to balance. Sure, I feel >dizzy. The worst time for it is when I arise after staying still. However, >it does improve (not go away!) as I move about. Frequent short walks helps >more than a single long walk. Frequent exercise of balance and movement >helps remind my cerebellum. > >Sorry for the long note. Hope it helps. > > >Regards, >=jbf= > > B. Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 please do not send me anymore mail Quote Link to comment Share on other sites More sharing options...
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