New Kid On The Block

[dawn]

Welcome Mark!

I have been dealing with this "syndrome" for my whole life I think. I got really sick in my mid 30's after a sinus infection. I am now 52.

I have never been able to accept being sick. I have seen psychiatrists, psychologists, social workers and I cannot accept it.

My physcian also was sure I was his one pheo he would diagnose. Then it was testing for addison's (he was sure). NOT.

I have been to Mayo twice without any revelations.

I wish I had some words of wisdom. My physician of 17 years presented my case to the new residents and if they could come up

with something helpful, he bought them a 12 pack.

I'm tired. I'm sick of having syncope, tachycardia, irregular heart rhythms, headaches, nausea, vertigo, loss of appetite, loss of

libido and on and on and on.

If nothing else this a good place to vent.

Dawn

[mallen1]

Thanks Dawn. Thanks for being kind.

-Mark

[ajw4790]

Hi!

I just wanted to jump in and say hi!

Sorry it took me so long since you first posted... you know life and POTS related crashes...

I am still new on the board and have been struggling to keep up with everything just recently.

I will catch up sooner or later!

Anyways, welcome to the board!

[flop]

Hi Mark,

sorry to chime in for the first time such a long way into this thread - it is impressively long and I had to wait until the brain fog cleared enough to read through it all in one go.

Welcome to the club, as others have said sorry you have to be here but it is a great place to have to explore thoughts, share support and just have a general moan on bad days.

Spinal injuries and dysautonomia (no personal experience of any significance but I have read an awful lot about dysautonomia over the past few years!). I live in the UK and in August was very fortunate to go to London for an appointment with Prof Christopher Mathias, I am now waiting to go back for inpatient autonomic assessment. I had heard of Prof Mathias's reputation as a dysautonomia specialist but it wasn't until I was referred to him that I started to find out about his research and interests. I was quite supprised to see that his special interest (he is a Professor of Neurovascular Medicine ) was in spinal injuries. Please excuse the following cut-and-paste from the website of "Spinal Research" http://www.spinal-research.org/

Professor C J Mathias DPhil DSc FRCP

Imperial College & Institute of Neurology, London

Professor Christopher Mathias has been Professor of Neurovascular Medicine at the University of London since 1991, with a joint appointment held between Imperial College London and the Institute of Neurology, University College London. He is a consultant physician at St Mary's Hospital and the National Hospital for Neurology and Neurosurgery (NHNN) at Queen Square.

Professor Mathias is both a clinician and research scientist. His interest in spinal cord injuries began while a Rhodes scholar at Oxford, where his DPhil thesis was based on autonomic and neurohormonal disturbances affecting the cardiovascular system in spinal cord injuries; much of the work was performed at the National Spinal Injuries Centre, Stoke Mandeville Hospital. He has devoted his clinical research over the last 30 years to the role of the autonomic nervous system in health and disease.

He directs two national referral centres, the Neurovascular Medicine Unit at St Mary's Hospital and the Autonomic Unit at the NHNN, that specialise in autonomic disorders in a range of neurological and medical diseases, including spinal injuries. He is an active member of the Clinical Research initiative supported by Spinal Research.

He and his colleagues are involved in developing, evaluating and introducing autonomic tests that indicate function of specific segments of the spinal cord, of particular relevance to monitoring of interventional therapies for spinal cord repair in humans.

I think that given your medical training (and therefore likelyhood of understanding more than the average patient) it would be well worth your time to look up some of his research and see if there is anything that correlates with your problems or may help you attempt to make sense of the craziness that is your mixed bag of symptoms/diagnoses.

Welcome again,

Flop