Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

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Old 06-16-2014, 06:52 AM #1
rach73 rach73 is offline
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Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
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Ellie,

I was going to say the same as Annie, the heart rate and palpitations sound like postural orthostatic tachycardia syndrome / orthostatic intolerance / autonomic nervous system dysfunction. Do you have a bp cuff that also measures your pulse because I would suggest you carry out a poor mans tilt table test.

Lie down in a semi dark room for 20 mins, no music or interruptions. Take your pulse and bp reading after 20 mins. After that stand up straight, keep legs straight and keep movement to a minimum. For best results stand against a wall - but don't walk! Measure your pulse and bp at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 mins. If your pulse has risen above 120 beats per minute / or increased by over 30 beats per minute from your base measurement - from when you were lying down then you have postural orthostatic tachycardia syndrome, also known as PoTs.

For more info head to Pots Place also known as DINET where they have lots of info on PoTs and autonomic nervous system dysfunction plus a great forum where people will be able to give you lots of advice.

After you have done your poor mans ttt and if the results are positive contact your GP and ask to have a proper tilt table test. If you are in the UK there is a charity called STARS that can help you and POTS UK that will also help. STARS have a help line and are very good.

I hope this helps, as you can see from my signature I am no stranger to PoTs or ANS dysfunction.

Rach x
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
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.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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