UCLH says "Goodbye"

[Peter Charlton]

So, after being told I have "Autonomic Instability" and finally getting the promised tests, I had to go to the Autonomic Unit at the UCLH to hear that the tilt table test and blood pressure tests shows my Autonomic System is fine so not to come back.

Is that really the case that any problems with the ANS will also effect blood pressure and heart rate, that you cannot have other symptoms of Dystautonomia without having POTs at the same time?

So I really am at a loss now, whilst some of my symptoms such as low blood oxygen, erratic heart rate, arrhythmias all got a lot better at once back in April, the loss of appetite, early satiety,   the drunk feeling, the peripheral neuropathy, the balance issues, the brain fog, the total exhaustion are all getting steadily worst.  

Any suggestions as to where I should go next please?  

[Echo]

@Peter Charlton You can definitely have dysautonomia without blood pressure and heart rate problems. I have non-POTS dysautonomia and I've seen there are other people on here who have the same. Mine was diagnosed by ECG because of T-Wave abnormalities but other than that I'm like you I have a lot of the symptoms minus the heart rate and blood pressure. Do not give up with the medical care. Insist there are problems. I would go to the dysautonomia international site and read up on the symptoms, print out and take to your doctor. POTS is only one type of dysautonomia. Wishing you luck!

[Clb75]

Have you seen a neurologist? You could have autonomic neuropathy without having pots. It’s so hard to find a good doctor, I know you must be very frustrated. 

[Pistol]

I would like to add that POTS, NCS and OH are only the types of dysautonomia that cause orthostatic intolerance. There are several other dysautonomias that do not necessarily have to cause those types of symptoms. Most people on this particular forum deal with orthostatic intolerance symptoms. 

[Peter Charlton]

3 hours ago, Echo said:

@Peter Charlton You can definitely have dysautonomia without blood pressure and heart rate problems. I have non-POTS dysautonomia and I've seen there are other people on here who have the same. Mine was diagnosed by ECG because of T-Wave abnormalities but other than that I'm like you I have a lot of the symptoms minus the heart rate and blood pressure. Do not give up with the medical care. Insist there are problems. Go to the dysautonomia international site and read up on the symptoms, print out and take to your doctor. POTS is only one type of dysautonomia. Wishing you luck!

Can I ask what your T-Wave abnormalities look like please because sometimes when I am feeling particularly bad and take an ecg my T wave towers over the preceeding R wave but I read its never supposed to go above a third of the R wave.

[Peter Charlton]

2 hours ago, Clb75 said:

Have you seen a neurologist? You could have autonomic neuropathy without having pots. It’s so hard to find a good doctor, I know you must be very frustrated. 

The thing is, yes, I saw a neurologist at Britain's foremost Autonomic Unit https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/AUTU/Pages/Home.aspx

The neurologist could see something was wrong with me due to my balance problem, she did the normal touching your nose test, and said she didn't know what the answer was, but that there was nothing wrong with my cardio vascular autonomic system, surely she would have known that there are other systems that suffer from Dysautonomia, I though she would have arranged different tests instead of just sending me away with no clue what I am supposed to do next. 

[bombsh3ll]

Hi Peter I'm sorry your visit to UCLH wasn't fruitful. I am currently on a 10 month waiting list for autonomic testing there (if the Scottish Health board will fund it). 

If your problems now relate more towards peripheral neuropathic pain and loss of balance, maybe a general neurology clinic would be the next step if you haven't already been to one. It may be that the autonomic specialist at UCLH has a very narrow and specialized focus of practice and is not equipped to deal with wider ranging neurological issues. 

Can I ask if they did supine and upright catecholamines and blood autoantibody tests? Those are what it has been agreed I will have. I do wish there was more willingness to focus on symptom relief though than just test after test like a lab rat with nothing gained from it and no further care if your results aren't conclusive for anything. 

My dad has offered to pay for me to visit the US to see Dr Grubb, and I am also on a waiting list of about 10-12 months for this too. If going private is an option for you it may be worth looking into. There is a private autonomic specialist in London Professor Mathias at Queens Square, but the impression I have gained from other patients and contact with his office (which has only email contact, no phone number to speak to anyone) wasn't favourable. 

Best wishes with your next steps, never give up seeking help. 

B x

[Pistol]

@Peter Charlton - when I first became severly symptomatic I went to an autonomic dysfunction center here in US (Vanderbilt) twice. They went over my TTT results which showed NCS, gave me a neuro exam and did autonomic testing and said there was nothing wrong with me (despite numerous monitored episodes of tachycardia, hypertension and syncope). So I went to see another renowned specialist here ( Dr Grubb ) and he spent 2 hours of careful listening and told me I had hyperadrenergic POTS. He then ordered catecholamines on the spot and 2 weeks later was able to confirm my diagnosis. Obviously autonomic testing does not catch all dysautonomia and if the "specialists" are not willing to take ALL test results and the severity of SYMPTOMS into account then they will not be able to diagnose you properly. I agree with catecholamine testing - that confirmed my diagnosis and therefore provided treatment options. 

P.S. I also have T-wave abnormality which seems unrelated to POTS and is considered harmless. 

[Echo]

@Peter Charlton Hi Peter, my T-Wave abnormality is that it turns upside down/inverts when I'm standing. It's the right way up when lying down and then turns upside as soon as I stand. My cardiologist says this is a sign of autonomic instability.

[Peter Charlton]

On 11/8/2018 at 10:22 AM, bombsh3ll said:

Can I ask if they did supine and upright catecholamines and blood auto antibody tests? Those are what it has been agreed I will have. I do wish there was more willingness to focus on symptom relief though than just test after test like a lab rat with nothing gained from it and no further care if your results aren't conclusive for anything. 

Best wishes with your next steps, never give up seeking help. 

B x

They did do catecholamine tests lying down and upright, but if they did aqn antibody test they never mentioned it, not even on my follow up appointment.

Not sure about my next step, I am gradually deteriorating so think I might just wait until it will be impossible for them to dismiss me.

Best wishes to you as well.