Power Lifter

I would be interested in those that got motorized wheelchairs/scooters. My doctor prescribed me to get one, but the company said that none of my diagnosis would qualify me to get one. When I talked to the supplier originally he indicated that a person would need to be on oxygen to get one unless they needed it in the house. I have trouble walking long distances or standing for a long time. We took my grandchildren to the carnival and I made it for about an hour before I had to lay down in the grass. I was done for the evening. Had to get the EMS to take me to the car. This is also typical for the big box stores (Home Depot, etc.) I usually use their scooters when I can. I could use a regular wheelchair but my arm strength is not good.

Thanks everyone. Your posts are really appreciated and it is nice to know that I am not alone

I know my pots is at least in part secondary to EDS3, but that doesn't mean I don't have adrenaline issues too. For some reason I am not good at accepting that some things may not be 'cos I'm bendy' - probably because I like to think that I'm healthy

You have all given me some food for thought, but most importantly the confidence to talk to a Dr about it. I'm not imagining it. (When I last mentioned this to a dr 'It's like I've run out of adrenaline' he told me not to be ridiculous and diagnosed psychosomatic-ness. Sigh.)

Even if all my tests come back negative, that explanation of not enough blood to the brain and the body trying to compensate with epinephrine sounds like it may be me. It is easier to work out how to best help yourself when you have some idea of what is going on

Thanks again, - I'll keep you posted,

Hannah

Hannah,

My symptoms are similar to yours. I often have trouble walking and use a cane sometimes. John Hopkins suggested I get physical therapy to help. At the end of about my 3rd week of therapy I had what I call a "spell". I had slurred speech, foggy brain, dizzy and trouble walking. For the most part this cleared up after 30 minutes, but I had speech trouble for about 3 more days and trouble getting around. In therapy I cannot walk more than 4-5 minutes before I start shuffling my feet and need to stop. I usually always have a bad headache and feel nauseous when this happens. Normally my spells cause me to feel like I lost all of my strength and I am "out of it" for 20-30 minutes. These occur more often when I over do it. Air travel and long trips in the car also cause these spells. I have never fainted.

Guy