NeuroTalk Support Groups - Update on me.....got a diagnosis

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Update on me.....got a diagnosis (https://www.neurotalk.org/myasthenia-gravis/143621-update-diagnosis.html)

Rachel, I'm happy you have a diagnosis. Is this in addition to the MG or instead of the MG? I hope I'm not out of line in asking.

I did read some of your blog. It's always interesting to me to read others stories. It sounds like you've had a long road on your way to being diagnosed.

Good luck with everything.

Thanks for all your messages.

Mestinon - Unfortunately just one 30mg dose is enough for me to be in agony. So I do try to avoid taking it now as my stomach problems are so much worse. I do take it when I experience problems with breathing (elephant on the chest sensation) or if I have ptosis that is threatening to close both eyes.

Fluids= Like you Annie59, I drink excessively over 3 litres a day, think its called Polydypsia (probably have spelt that wrong), Ive always drunk loads even as a baby. Ive had more tests for diabetes than Ive had hot dinners and they always come back fine. I suffer with dry eyes and mouth and have raised this with my GP, but it was ignored. Perhaps now with a diagnosis of POTS I may get him to listen. I need to email him with the results of the test (TTT) but every time I start I end up getting angry writing rude things and not sending it. LOL! Will have to calm down.

MG or Not MG Ive had the achr blood tests, Musk tests, SFEMG x 4 all come back negative. However my clinical signs on examination by a neuro ophthalmologist led him to believe I have MG. The only test I am positive on is the ice pack test which shows that there are issues with the NMJ. Ive had no genetic testing for CMS. One tensilon test was positive one was negative.
Who's to say I don't have ocular MG? My eyes don't move properly, one pupil drifts out to the left when I am tired and I can not look up without both eyelids dropping? I also have double vision which resolves if I close one eye So to me the jury is still out......thats why I wont leave the party LOL

Ptosis Low blood pressure / Pots in rare cases can cause ptosis and facial droop, like you have had a stroke. There was a case reported on in the New York Times which forum members on DINET forwarded to me. When I have ptosis my BP can be low or low normal. Again the jury is out. What complicates the issue is that mestinon raises the blood pressure, so does my ptosis resolve because of my blood pressure rising or is it because I have MG?

So there are a lot of questions I don't have answers to but hopefully this will be the start of me being taken seriously or at the very least getting treatment for POTS, which is leaving me pretty much bed bound at the moment. I only feel OK when I am lying down.

Thanks again for all your messages xxxx

Love
Rach

congrats! i am glad to see progress, especially in the form of diagnosis.

Quote:

Originally Posted by rach73 (Post 737428)

Hi All,

I just thought I would let you all know that I actually got a diagnosis yesterday. I have been diagnosed with postural orthostatic tachycardia syndrome or Pots for short. I am going to try and explain very basically what it means as I am struggling myself with explaining it.

OK in normal healthy people on rising from supine position and standing your heart rate would increase by 10-15 Beats per min (bpm) and then in a few minutes it will settle back down as your body gets used to the pull of gravity on your blood supply, on standing up blood drops to abdomen and legs. In POTS our heart rates (hr) go up by at least 30 bpm and stay there. Mine hr goes up more than 30bpm. All I know is that during the test my hr went to over 150bpm and it also hovered around 130/140 bpm. In POTS you don't have a drop in blood pressure (BP) bp stays the same or rises.

POTS is treatable not curable and some people go into a spontaneous remission, some people don't.

The good thing about the diagnosis is that it opens the door for more testing for me. Its unlikely that I have primary pots as my symptoms were not triggered by pregnancy -don't have kids, trauma - no, surgery no not when symptoms started. Secondary pots runs alongside autoimmune disease like MG (funny that!) and ehler danlos syndrome- EDS (joint hyper mobility). I do have joint hypermobilty probably EDS - but my GP was saying I couldn't be referred to a specialist.

I only got my tilt table test as they wanted to humour me. They thought it wouldn't show anything and my GP told me POTS doesn't exist and its normal for your heart rate to go up over 30bpm when standing.......really?

The tilt table test is the gold standard. Not a pleasant test but then what test is.

So I just wanted you to know that I may not be posting regularly but my adventures continue. For those who are interested in my story and my latest appointment I have details on my Blog http://themyastheniakid.blogspot.com/

Thanks for all your support guys. Particularly Annieb3, Alice and my face book chums.

Love
Rach:hug: