anna

So so very sorry you have to be going through this, take care sending you positive energy. Anna

About 8 months ago my mother was diagnosed with mid stage dementia with Lewy bodies, she had a memory assessment, I was present and I can assure you I could not answer half the questions my mother did with ease! I have found that I have from very young had issues with memory and processing information, but I am very much worse on days my other ANS dysfunction symptoms are bad.

" A scan that shows no unexpected changes in the brain does not rule out conditions such as Alzheimer's disease because in the early stages of the disease the changes can be difficult to distinguish from normal ageing. " http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=260 Did you mean early onset Alzheimer's or Alzheimer's at an early stage?! sorry lI have lots of brain fog at the moment.

As far as I recall we were told the waiting time was around 18 months on the NHS or much much quicker via the private route, I did hear talk that Prof. M was possibly leaving the Autonomic and Neurovascular Unit, in London, I am not sure whether this is actually going to happen but it might be wise to contact his team and see what is going on.

One test is a vaccine challenge test, a friend of mine is having this test done to see if she has a PIDD. http://ainotes.wikispaces.com/file/view/Use+and+interpretation+of+diagnostic+vaccination+in+PID+-+JACI+2012.pdf

I and my 3 children are often like this!

A better test for this might be a stress test echo http://www.nlm.nih.gov/medlineplus/ency/article/007150.htm It is much less invasive and to be honest a much more logical test to take as you are having this issue on exercise.

So sorry that this has happened to you, this sort of issue tends to send our symptoms into over drive for a while. I hope you are able to move through this part of your life without too much knock on effect to your body. Take care of yourself.

Thank you for posting this link it is a very helpful one for my family as my son's Dr. continually puts my son's sleep issues into a different box to his ANS dysfunction issues yay proof I am not going mad lol!

It is all so odd my son's Dr. told us that son's symptoms are related to son's diagnosis of Ehlers Danlos syndrome not POTs and the Dr. also said my son's chronic fatigue is just that chronic fatigue and again not POTs related. Oh my head really does hurt with all this confusion going on.

Batik, my son has the same problem his TTT was negative his Dr. told as his problems/symptoms were not down to POTS and that was that grrr.. BUt son still has major problems going on! Some one here posted an article a short while ago that is very useful. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564028/

Soooo well done to your son

Tobiano this link may be of use: http://www.patient.co.uk/health/postural-orthostatic-tachycardia-syndrome

You might want to look at blood vessel spasms! While looking around the net I came across this Dr. not sure but he may be of use to some, I am not sure if this Dr. is completely on the ball but he does raise some interesting possibilities. http://www.mvpdonline.com/mvp-dysautonomia-people/mvp-dysautonomia/

So true Issie numbers do not seem to always well in my families case often correlate with symptoms.