In which I visit the god-Professor and get a shock!

I went off for my appointment at the hospital this morning. I am more than aware of how all this works so I had no hopes raised and accepted I would be given the brush off in some way.
There are words I never expected to have come from my mouth or keyboard, but here they are; The Professor was lovely! He was respectful, honest and straight forward. He made no assumptions but actually asked me questions about my wheelchair use and lifestyle. He did a short poor man’s POTS test and said that he tries to avoid sending people for Tilt Table Tests (for which I was so grateful!).
He says it doesn’t look like classical POTS as my BP goes rocketing up with my pulse. Pure ANS dysfunction or failure would cause Hypotension. I’ve read this so I knew what he was on about. I assume I have that narrow band of POTS where hypertension is part of it and that would be adrenal. I don’t know yet.
Next step is a 24hr ECG. I should get wired up in 4 to 6 weeks for that.
He noted the complicating factors for my tachy being how bad the asthma is and the very strong meds I’m on for that.
And of course he noticed the Amitriptyline. He’s not going to rush into taking me off that. He seems to know a few patients who need it for pain.
I asked him the question I am now going to ask every doc I see. Which camp are you in over FMS and ME – the “real disease” camp or the “all in yer’ead” camp. The man accepts that both FMS and ME are diseases we still don’t know much about. He pointed out that the same can be said for POTS. He would accept the limits to our knowledge rather than assume the patient is making it up or has a mental health problem.
With the complications I have he couldn’t promise I wouldn’t have to have a TTT in the end, but he’s going to work hard to find some answers and a treatment that can get my heart rate down.
As we were leaving the nurse who works with him said, “He doesn’t give up easily you know.”
WHoohoo! He even agreed with her!
I know there won’t be any easy answers. But at least I think I may have found a doc who actually wants to find some answers.
I was shocked by his open, honest attitude.
I know the road ahead is still bumpy and made more so by my crap lungs, as he pointed out. But at least I have met someone who wants to help. In 10 long years, this is a little light in the long tunnel and I am grateful.

Comments

Wow! he sounds good. I have more respect for docs who say the dont know something then the docs who just make some crap up so it looks like they have all the answers. What is his specialty? neurologist??
Hope things improve while seeing him.

cheers!!
 
Shock, horror! Indeed. :) There are docs like this, I meet them occasionally, but for every one like this there are ten who want to maintain the facade that they know everything.
 
It was a breath of fresh air. He's a Cardiologist who specialises in POTS. He even admitted they still don't know very much about POTS and that sometimes (by that I read often) his patients have been told its all in their heads.
 
Hi, I'm new to this forum and was so pleased to see this blog. My daughter is ME sufferer and we're trying to get her seen by cardio's re tachycardia but they say she has to be 16 to do TTT. Interested that your Prof understood how ill it can make ME people. Would love to meet him :)hope he can really help you
 
Lou, I recommend you do the poor man's TTT with your daughter. Try and pick a day when she feels really bad to get the best results.
Have her lie down for about 15 minutes. At the end of the 15 minutes take her pulse and BP.
Then the difficult bit. Get her to stand up, head up straight. Take a minute and do her BP and pulse. keep her standing still and take BP and pulse every minute for 5 minutes. If she can keep it up she should stand up up to 40 minutes taking her BP and pulse every ten mins until she can't stand any more. Make a note of symptoms. Make sure the sofa or bed is behind her in case she faints, or has to sit down quick.
I've done the test twice with my son and the results can be shown to the doc. It's how I got the referral to the POTS spec.
Good luck.
 
Hi Shell,
I was both relieved and delighted to read you've found a good guy; a rarity in the UK! He even noticed the complications with amitriptyline and that of course you need it for your pain. Byron Hyde writes about amitriptyline, tachycardia and other effect with regards to ME, in his book

Missed Diagnoses Myalgic Encephalomyelitis & Chronic Fatigue Syndrome Second Edition

The sad fact is though, all meds contain so kind of trade off
You have been on my to-do-list for over a week, I wanted to post this for you, (the lovely Proff may have given you it ) re your seizures
http://www.stars.org.uk/medical-professionals
You may even be a member already, they offer advice and support.
kindest regards
allyb
P.S I lasted 10mins on TTT and had to be taken down. But that was enough to gather all evidence needed, by that time the blood was all in my legs and I couldn't string a sentence together, pulse in 120's throughout. That plus the journey made me very very ill :-(
 
Thanks Ally. I'm not a member of STARS as yet. The Proff gave me their paperwork to look at. I am hoping to discuss the seizures with him. I think it likely they are POTS related or at the very least to do with how my daft body handles infection.
I've not had a seizure since August,. Not infection to speak of either and of course I'm contantly freezing cold, so if heat sets it off - no seizures. In a bizarre paradoxical way of thinking I almost wish I could just get another infection and mild fever to have the darn seizure and get one of the older kids to film it - so I can have that humiliation out of the way!
I am sorry you had the ordeal of a TTT. When I think of the nausea, headache, blacking out and sheer yukkiness that comes with just a bad day's standing up - I am really hoping to avoid a TTT!
I hope the spectacular results you proivded them with on yours has meant some help at least.
 

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