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How to get a diagnosis?


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new to the forum

after nearly 20 years of different symptoms I'm beginning to think I may have a form of dysautonomia..

I started with nerve disturbances (sensory) in my legs and cramping back in 1999, at the time I was diagnised with idiopathic paresthesia- since then it has waxed and waned, sometimes it's like RLS , i saw Dr Mary Reilly in London andfor sure she thought there was some problem with the long nerve fibres, anyhow they were happy I didnt have MS and sent me on my way and to maybe try Gabapentin if it got worse. My legs can feel like they are moving, even if not, it's like too much electricity down there.

I managed myself for many years with diet, supplements, lifestyle etc, had a relapse 5 years ago, felt awful and was diagnosed with sodium channelopathy or "migraine with aura" by a neurologist and took amitriptylene 20mg for 5 years but due to heart arythmia had to stop taking it (QTc interval 502) , the QTc interval went back to normal after stopping amitriptyline but on a recent ECG (to check on the chest pain) its back up to 502 again so Im to see an electrocardiologist next month (my mum has long QT syndrome so its possibly hereditary)

In 2006 had my amalgams removed- no effect, but who knows, maybe Id have gotten much worse

My heart rate is very slow, currently 45, was around 50 borderline bradycardia so i'm a little worried, docs seemed to think it was fine... Im sure as a younger man it was normal, when I ask the docs they just think im hypochodriac

I had a tilt table test not so long ago and nearly passed out, was told it's vaso vagal syncope

i also have frequent urination, tight chest, malaise, tinnitus, gut trouble, some days not so bad, others not so good (about 3 good then 4 bad at the moment, that wasnt so pronounced when on amitriptyline)

hot weather is an issue- makes me feel much worse

anyhow, docs seem not to be seeing the big picture and putting it all together Im beggining to think I should push for a proper diagnosis as all this is part of the same thing! Dysautonomia.

Anyone tried a feacal transplant ?

Sorry so many questions, im just fed up of it all


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Personally I would push for dysautonomia testing. At the very least it would rule it out. Seems like you are in the UK and I have noticed a lot of people say it takes forever to get in. So be prepared.

Curious, have you had an echocardiogram done on your heart? So that they could check the structure. My PCP told me she had another patient with POTS and she had a structural abnormality that caused it. Turns out they didn't find it in her heart but found it in her son's when he developed POTS. It is only hereditary so she had to have had it. 

I find it interesting how body structural issues can cause seemingly unrelated issues. 

Good luck with finding your answers and I hope it doesn't take too long. 

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As  wintersnow said you have a diagnosis perhaps you didn't get much information how to manage it after your TTT.  I too have VVS and POTS and in the UK

STARS is a charity in UK that has very helpful information and a helpline where you can talk with a member of their team, they pointed me in the right direction at a time of great frustration and desperation .


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@dancer65 I too have NCS and POTS and have found very helpful information on STARS - especially about neurocardiogenic seizures ( or reflex anoxic seizures ). I suffer from them and there is barely anything documented here in the US.  

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They have a patients day in October VVS and POTS are two different topics this year but you can go to any talks you want I am hoping to go Dr grubb will be there !

I am a member with stars and they send up to date literature, worth the membership fee and a way of contributing ! 

Hope you are doing ok really hot again in Wales  today we not use to this weather !


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