lynda

hi and thanks for your replies. Just gonna post a little of most recent neuro letter..... 'there is a defect in the autonomic nervous system.....the entire cholinergic limb is damaged.....gives rise to such problems of dry mouth, constipation etc and bilateral tonic pupils......also another constitutional tendency towards joint hypermobility.....this tendency is more likely to cause problems with blood pressure and predisposition to chronic joint pain. It has an autoimmune basis and no recovery is likely, symptoms may become more prominent'. Any comments please most welcome ?

thanks rick, someone once said dysautonomia is a smorgasbord of symptoms, seems no two the same! Have no idea of what type you have, but very glad you seem to be on the mend, hopefully it will continue and you can get back to full health. X

hi, I've put up a post about acute or pure cholinergic dysautonomia which my daughter has. Its the parasympathetic nerves that don't work so no tears, no sweat, saliva, some dysphagia, very slow gut motility, dry skin, tiredness, lower bp, faster heart rate and probably some others! Also hs joint pain, mostly hips, back, wrists, headaches. Is this a similar presentation to you?

hi corina, prof Mathias is now retired and hazel only sees whoever is available every couple of years or so , just for observation as there is nothing treatment wise that can be done. Hazel tries for good diet, been changed from metformin to (cant blooming remember the new one) and if her sugar levels don't go and stay down, its insulin! Her dysautonomia is very rare so any one with her symptoms would be brilliant, especially in relation to joint pain! Sending beat wishes corine xx

And I had what was known as 'being double jointed' when I was a kid, always been very flexible, am 59 and still quite bendy! Know its a form of hypermobility, and skin easy to get stretch marks, but not EDS. Hazel is a bit mobile but not as much as me.Her dysautonomia was a post viral thing, prior she was very healthy child!

No, not PAF, isn't PAF degenerative and mostly older males? Hazel got hers age 12 and it comes under pure cholinergic dysautonomia, widespread parasympathetic failure, as in cholinergic cos both parasympathetic and cholinergic sympathetic pathways to sweat glands are affected. Blurry vision, dry eyes, fixed dilated pupils, xerostomia, dysphagia, constipation, urine retention, anhidrosis, distended abdomen, raised heart rate, lower bp but not to fainting , dry skin, fatigue, some brain fog. Seems also to have achy and sore joints, mostly hips, back, knees and wrists! We dont understand that bit. Oh and just diagnosed with diabetes type 2 following gestational diabetes (understand this is unusual in itself)......

thanks for your reply, I am hoping that a few may recognize symptoms and offer alternative names! Have considered eds, think if it were that, it would have been picked up. She had virus type symptoms initially, flu type symptoms, lots of nausea and vomiting ( due to total shut down of gastric function) and no crying. Then admitted to hospital for observation and tests, diagnosis by Prof Mathias of the national neurological hospital in London. Always been told its acute or pure cholinergic dysautonomia but yes, possibly different names! Interesting to see what crops up x

Hello, nice to meet you all. I note most posts relate to POTS, wondering if there is anyone else with my daughters condition? We are from the UK and no other contact with anyone due to rarity of condition. Diagnosis was about 18 yrs ago when age 12. Post viral. Symptoms - cant sweat, cry, non reactive pupils(apart from pain stimuil) dry mouth, dysphagia, low bp, faster heart rate, bad gut motility, tiredness and various other niggles. Seems generalised joint pains are popping up, back, hips, knees, wrists - can anyone shed light on that please. Oh and she has developed diabetes following gestational diabetes - probably going to need insulin! Be interesting if there is anyone else with her smorgasbord of symptoms! Thanks xx