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icthus
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I've made a quantum leap and am doing a forum - the first time ever - so I really don't know if I'm doing this correctly.

I have the same history scenario as most of you. Misdiagnosed since 1991 by the locals, Mayo in '98, Cleveland Clinic in '03. I finally got to the point of carrying a copy of a shrink report valildating a "normal" profile to dismiss the typical diagnosis by the physician. That leaves them stuttering for closure.

Anyway, the diagnosis finally came after the next bout of very expensive tests in March '05, and your forum has confirmed it. Heartfelt thanks to each of you. I'm just so sorry that it's your suffering that has validated my suffering. Mourn with those who mourn.

Question: Myknees/legs are having a difficult time a) transitioning from sitting to standing, B) holding up my body for the first 10-15 steps of walking, and c) the deterioration is progressing such that I can quanitfy the change on a weekly basis. The knees want to buckle while transitioning. After this initial glitch, I am ok. Now all of you know that "ok" means the POTS symptoms are "manageable." I chuckle when I use that word with physicians. They think "ok" means walking around the block. I'm thinking "ok" means getting to the kitchen.

Speaking of which, aren't cordless phones the greatest? Now I just keep it in the skirt pocket, and no longer need to run :lol: to get the phone. Just another little thing to be thankful for.

Anyone with the same problems - and are there any remediations?

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Glad you found us, and gladder still that you've found a venue for support.

Like you, my knees go all wobly quite often, particularly from seated to standing. First, if you haven't tried support stockings, you might want to consider them. You can find some sources to buy them on the internet in the "help yourself" thread that is pinned at the top of the general discussion.

Also, I try to take it slow when adjusting to standing. I stay near a table or a chair, or hold on to a window ledge, edge of bed, etc while adjusting.

Also, excersising helps--but do so with permission and direction of your doctor. Check the "what helps" section of the primary DINET site http://www.dinet.org

Nina

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Hi there! Glad you found us, sometimes just knowing there are others out there with the same crazy/weird problem(s) is enough to get through another day. My knees also get wobbly, but not progressive like yours. I am just careful to grab something when I stand up and stay there for a while before moving. Sometimes it happens while I am walking and I just stumble or fall. I know that for me and many others on the site the hot weather makes things much worse. I think the compression hose idea from Nina is worth a try.

Ann

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My first symptom was my knees buckling. As time went on without a diagnosis it just got worse and my leg muscles started spasming whenever I would try to walk. With treatment it has gotten somewhat better. I agree with everyone else, try compression stockings. I notice a big difference when I am wearing them. My knees do not buckle as severly. Good luck!

Oh also, I always keep a cane with me to help me stop myself from falling.

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Hi,

Welcome to the forum. I have a similar problem. When I start to stand I have to push myself with my hands because my legs are not strong enough to lift my body. So far, I have seen different doctors and had a negative EMG. I am still looking for the cause of my problem.

I like the idea of carrying a "sanity" report to shut up those doctors.

Ernie

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Icthus-

welcome! sorry that you seem to share in with the symptoms many of us have but glad you found the forum...it's a great place with tons of good info & great people too!

i too think it's great that you have an actual report clearing your mental health to carry around, and even better that it has been effective for you. (unfortunately i've had some docs in the past who didn't care that the psych folk said i was in grand shape so they would probably have even dismissed that!)

regarding the leg instability, i too have wobbliness/shakiness at times, particularly if i try to get up after sitting still for awhile. generally speaking i wiggle & move around a lot while sitting (or doing anything) as it seems to help me. i actually end up with completely numb feet & lower legs at times...sort of like when they "fall asleep" except for i haven't been sitting on them & they don't have the pins & needles. but i digress...so....moving around before standing helps me. so do compression hose that others have mentioned, waist high (if you do a search you should find a number of discussions on the hose).

and yet there are times when i'm just shakey/wobbly in general. it's often my whole body then but is more noticable in my legs. i also seem to be better in this regard since starting on mestinon in may...of course i don't know if this is a direct result of the med or not, but i'll take what i can get.i haven't noticed a progression over time (in terms of my legs) but rather lots of ups & downs.

again, welcome!

:-)melissa

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Icthus

Welcome and I love your first post!

I haven't had what you're explaining. I usually just have severe knee pain after sitting at the movies and it's painful to walk out. I've also just starting experiencing this occassional restlessness, irritable feeling in my legs that is very noticable when I'm very tired.

Anyway, I'm glad that you found us and hope to see more of you around the board ;)

Steph

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