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Worried you have MS? Or you could have POTS...

Posted: Tue Dec 04, 2012 8:21 pm
by magpiepots
Hi to all those searching for answers. See if any of my symptoms sound familiar to you. If so - read on....

Uncontrollable twitching; hyper-reflexia; tremor; aching legs and back; dizziness; reduced appetite; weight loss; extreme fatigue; cognitive problems like difficulty finding words and focussing; headache/migraine; blue/purple/red lower legs; aching muscles; numbness in limbs; burning legs when climbing stairs; constipation; can't urinate properly anymore; muscle cramps; changed gait; nausea; light and sound sensitivity; and on and on..........

I am only 35. Until March 2012 I used to work 60 -80hr weeks and had energy to spare. I had to defer study and give up work.

I had a strong suspicion that I had MS as I ticked all the boxes except active lesions, optic neuritis and foot drop. To be honest I won't be surprised if I have a relapse at some stage and a formal MS diagnosis is made. After all blood tests and neurological testing couldn't pinpoint a cause my well-respected and trusted Dr figured I was a bit neurotic and had referred me to a psych but luckily another great doc followed his suspicions and discovered I have something called POTS - Postural Orthostatic Tachycardia Syndrome.

The initial symptoms are remarkably similar to MS and there is also clinical evidence of cross-over between POTS sufferers and those with MS or CFS.

I am very recently diagnosed with POTS and want to help potential sufferers by raising awareness. Diagnosis is remarkably simple -just a Tilt Table Test. See DINET.org and view the video CHANGES for more info (or view it on YouTube).
If you find this informational video helps you, please spread the word and help others.
Best of luck to you in the future. I know that many of you may be feeling isolated and self-doubting right now. It's hard to be strong if docs tell you there is nothing wrong when your body seems to be falling apart and betraying you. Trust your instincts as no matter the cause, something is wrong and there is no shame in persevering and seeking to feel better.

Chin up as high as you can (even if it is just a little) and remember that there are many people out there who understand perfectly the way you feel. When you don't feel strong enough, take strength from others.