Another Newbie From The Uk

[MrsMum]

Hi everyone

I've read lots of your stories while waiting for my "clearance" to join you all, and so much of it seems sadly familiar. Here, in very brief, is my history:

I am a patient who has spent years feeling increasingly lousy but being told it is due to ME which I was diagnosed with 25 years ago, and have been symptom free of for 18 years. I have all the symptoms of MS but have had 2 MRI's for MS which were clear, leading the consultant to lecture me for 1/2 hr that "neurological symptoms often have a psychological origin!". I also have have antiphospholipid syndrome, which again has blurred the issue.

I stumbled on autonomic nervous system disorder while trying to find constructive information on how to move forward and where to be referred to, to take to my GP after the poor experience with the neurologist. ANS dysfunction seems like being the answer - ie symptoms of MS but nothing ever shows on MRI scans.

All I need now is to find out who is the best doctor to see in the UK (South East area), and hope that this time I get an answer....

Looking forward to enjoying the understanding that only felllow sufferers have!

MrsMum

[pat57]

welcome aboard, many of us were told it was psychological . Its nice when you get past that- hopefully you will soon!

I was told to see a shrink, for pseudo seizures. Four years later- found neurocardiogenic syncope was the cause. It was worth the process because the right treatment makes all the difference.

You will get there!

[Sunfish]

MrsMum -

Welcome! I'm glad that you have found the site helpful thus far & hope you continue to find info & support here & you continue to seek answers. We have a good number of members from the UK so hopefully they will provide some insight for you in regard to doctors closest to you. There are a few listings on the DINET physician listing but I'll be honest that I don't know my UK geography well (despite having family that lives there...don't tell them!) so have no idea how close they may be to you.

All the best,

melissa

[flop]

Hi MrsMum,

welcome to the forum - I'm so glad you have found us helpful so far, hopefully you will be able to find answers to other questions here too.

The UK expert on dysautonomia is Professor Christopher Mathias, Professor of Neurovascular Medicine, St Mary's Hospital, Autonomic Unit, National Hospital for Neurology and Neurosurgery.

I see a cardiologist at my local hospital who is aware of POTS and made the diagnosis for me, but I am going to London to see Prof Mathias as I am in search of further answers. Sandra recently posted about her experience with Prof Mathias and he sounds really helpful. I wonder if your GP would refer you directly?

I hope you get to see a dysautonomia aware doctor soon,

Flop

[Rachel]

Hello MrsMum,

Welcome! I'm glad you found us. I hope you find some good help and information here. I also hope that you find a good doctor who can give you an accurate diagnosis. Keep pursuing it! Let us know what you find out.

Take care,

Rachel

[Ernie]

Hi,

Welcome aboard.

I agree that Prof Mathias is the most popular doctor in your country.

[MrsMum]

Thanks to you for your kind welcome.

I am having increasing problems with eating - food goes "down the wrong way" and I spend about 15-20 minutes trying to cough it out of my lungs. I mentioned this to the last neurologist who I saw, who assures me this is psychosomatic - but this is not something anyone would do "for attention", is it?

My GP is quite concerned because this was happening once a week or so, but it's now daily, sometime 2 or 3 times. I have a list of foods I can no longer eat: cornflakes, bead with seeds, biscuits, mince (unless it is covered in sauce), crisps. I find it increasingly hard to swallow even soft moist food. One doctor assures me this is a part of my antiphospholipid syndrome (APS), even t hough it is not mentioned on the APS symptoms list. Having one unusual diagnosis means it is hard to be taken seriously, having 2 means it is impossible to get anyone to look past those conditions.

I am worried that by the time anyone finds out what I have it will be too late. This is hard enough to accept, but when you have 3 young children.................

MrsMum

[corina]

hi mrsmum! welcome to the site!

i have the swallowing problem as well, although not constantly. it comes in periods where i hardly can't eat anything and then there are periods where it is much less. can't believe it is psychosomatic: who would like to get this very awful coughing with tears running over your face and the feeling that it might even kill you (and believe me, after all these years i am not the person to panic quickly, but it can be very scaring!).

i think when doctors tell you they think it is psychosomatic it might be their ignorance, but in my opinion it doesn't show any respect for their patients. i know that there are psychosomatic diseases but doctors should be VERY careful suggesting this!!! and i do know how much it hurts when people/doctors are telling you so.

i hope you will find a good and helpful doctor (i think you would need to see dr mathias in london???).

take care,

corina