sandra.p29

Dear You

I have not yet been diagnosed with MSA. however my story is a long one now 65 still working as Medical Secretary.

Always had some sort of GI issue and cramps. Diagnosed with pancreatic insufficiency 1998

Had severe dry eye had tear ducts cauterized.

Had a few issues with bladder but not incontinence

Always aching

Then had drop attacks not fainting. Saw Professor Mathis in London diagnosed withPOTS

Now i am having a few speech problems some days worse than others

Also have a stiffness in my muscles like you are moving against resistance

Had an MRI about 12 months ago neurologist said no signs of it. 

Also my daughter has symptoms and not supposed to be hereditary

What is your story

On 3/16/2023 at 2:25 AM, POTsie4decades said:

Hey! My name is Emily. I also have POTS and issues stuttering with the common syllables, but I have it even when I am stress free. It still comes and goes, sometimes even for several months, but the only common thing I can think of is that more my brain fogs over, the more issues I have with it. I’ve gotten to the point of actually stopping all speech for the day because no matter how much I stop and breathe, I still can’t get a word out. Is there any normal connection between loss of certain brain function and stuttering for cases such as this? Not necessarily related to having POTS?

I have something similar, it is like a slight delay when words coming out, but usually when I first start to speak, once i get going i am okay. EDS and POTS

Does anyone have problems with speech sometimes 

, getting words out not all the time comes and goes

Dear Friends

Does anyone have problems waking in the mornings, almost like brain wakes before body. General stiffness. I feel like I wake but the rest of ny body takes a while, some days better than others. Also have speech problems sometimes can't get words out.

I had an odd balance problem for some years but get it regularly now. I also have a weakness in my legs. I believe I have had dysautonomia all my life, but has worsened with age. 

I have gad dysautonomia all my life. Now 63, and over tge last 5 years have developed some gait priblems, diagnosed by professor Mathias 2005 with EDS and POTS

Does anyone experience talking problems

Does anyone have an increase in symptoms, issues following food

I wondered if anyone had felt or aware of a slight delay in the body. Almost like everything kicks in not quite in flow, when you wake your body follows slightly after, when you move muscles follows slightly after and this causes adrenalin rushes, almost like when you have a normal fear, like your body thinks oh what happened there, out the adrenalin pumps. I fall asleep with exhaustion, wake up 3 to 4 hours later, brain awake before body, start moving muscles then adrenalin kicks in 

I just wondered if anyone had had problems when stretching muscles on waking.  I wake quite tense and when i stretch i seem to discharge loads of adrenalin.  I have very low blood pressure at night even on medication.  Sleep with the head of the bed raised, but most bizarre. I feel anxious for an hour after then ok.  I have been told that blood will always look after the vital organs, so may be that is what is happening.  

Does anyone have problems on waking.  Always fall to sleep very quickly (cannot sleep on back though, triggers).  Also very low blood pressure at night.  I have started waking feeling very stiff and shuck out louds of adrenalin on rising and sometimes very shaky.  Diagnosed with Ehler's Danlos 3 and POTS.  

I have struggled tremendously with food; wondered if anyone has tried keto diet for dysautonomia or is too low carb counterproductive.