| I am a 62 year old male living in the midwestern USA. After an increasing problem with weakness and trembling in both of my lower legs which had come on gradually since the early 1990s, I finally started my search on the internet in early 2002 to see if I could find a description that fit my condition. The only problem with trying to find information about a health problem is that you really need to know what to call it. Search engines don't respond too well to "you know, my leg problem". After working my way through the words unsteadiness, restless legs, shaky legs, Parkinsons (oh, please no!) trembling, and tremor I finally found the www.orthostatictremor.org/ site (thank you, Gloria). I was so grateful to find this website with it's set of experiences and descriptions accompanied by all the medical jargon fitting my symptoms that I printed everything out and took an inch stack of papers to my general practitioner. He had no information on the malady and willingly referred me to a neurologist about 1 1/2 hours away in Kansas City (we live in a rural area). I then saw Dr. Charles L. Weinstein of Neurological Consultants in Kansas City in June 2002. He listened to my internet based self-diagnosis and looked at my stack of printouts briefly. He then had me walk back and forth in the examining room as well as attempt to stand still. I explained that when standing still, in order to maintain some semblance of vertical static control, I feel like I'm trying to grip the floor with my toes right through my shoes. He then had me sit down on the examining table and thumped me on the knees with his hammer. That was the extent of the exam. He said that I was correct, that I had Primary Orthostatic Tremor and that it was very rare (oh, thanks). Then I asked Dr. Weinstein how long he had been in practice and he said over 40 years. I asked how many cases he had seen of POT. He said that I was the second one (!) and that was why no one seemed to be doing any serious research on the disorder considering that it was not life threatening. When asked how to treat it, he said that various drugs used for controlling Parkinsons had been used but usually without too much effect or success. He wrote a prescription for Lorazepam which has proven to be useless in controlling my POT symptoms. I have not been back to see him. At this point I do not take anything although I am encouraged to see what some of the postings on this board say about Gabapentin. He did say that there was a medical school research group that was studying the disorder in Arizona but that they were having problems finding enough people for their studies to make them effective. Noting what some of you all have said about the social embarrassment (which I can certainly agree with) I have found a useful way to help the other person you are conversing with (as you pace back and forth like a tiger in a cage) to understand quickly using the following method. I simply say to them, do you remember what it was like to learn how to ride a bike? (They always say yes.) And do you remember when you found out that the only way to remain upright and to maintain your balance was to keep moving forward? Well, that is what having orthostatic tremors is like. And they seem to understand immediately. One other thing that I have found helpful is a product called a Sport Seat. It is light and very portable and looks like a cane when closed. In fact you can carry it in one hand and use it like a cane. But it quickly opens to a little three legged stool that gives you that needed stability when you are in a setting that requires you to stand in one place. You can find one and order it from Sport Seats International Ltd. in Garland Texas (800) 567-1898 and for those of you outside the USA TEL:(972) 485-8300 or on the internet at http://www.handyseat.com/ or by email through <info@sportseat.com>. It is a quality product, doesn't cost much and works exactly as advertised. The other day, I used mine for the first time in a library while perusing bookshelves - what a lifesaver! I'll write again if I develop any other answers to our mutual problem. Meanwhile - keep smiling (it makes people wonder what you're up to). Rich in Missouri 3vltr97bh802@sneakemail.com |