MVD testing declined...now what?

[Divasong]

Hi hearties

My NHS cardiologist said he would organise the test needed to tell me if I had microvascular dysfunction almost a year ago. At my last appointment he did a u turn and now says I am on all the meds that I should be on so what is the point it won't make a difference as they are treating me as if I have MVD. I should point out that I have had no response to the many meds I am taking, and the angina is still happening multiple times throughout the day having a huge impact on my 52 year old life.

My argument was that there was no definitive diagnosis and I want to know for sure that I do indeed have MVD - a suspected diagnosis is not enough. Following a referral to the Royal Brompton to a Professor there, who thinks I need to be seen by the pain clinic and to be signed off, my NHS cardiologist has said if that's what the Professor thinks then that's the way to go. I think they feel that it doesn't warrant the expense of the test when they are already treating me, and they say there is nothing else to be done.

Any ideas on where I might go from here?

[Milkfairy Heart Star]

Hello Divasong

I am sorry to read your post.

My heart sank. I went through the same situation nearly 10 years ago and it's so disappointing that my story is repeating itself☹️

I was seen by a Prof at the Royal Brompton he presumed that I had microvascular angina.

His approach was to start at the top of his list of medication, no individualised treatment or listening to my pattern symptoms.

When I didn’t respond to the medication I was told I had a pain problem not a heart problem. Finished with a comment that I was more likely to die of breast cancer than heart disease.

I said I didn't agree with him and that I thought I was having vasospasms as my pain reminded me of labour pain.

He agreed to refer me for a second opinion.

I then had a angiogram with acetylcholine in 2014 which confirmed my diagnosis of vasospastic angina.

You are seeing the wrong Prof. I suspect he's the same Prof I saw.

I suggest you ask for a second opinion. Ask your GP, local Cardiologist or Royal Brompton Cardiologist to refer you to a Cardiologist who carries out the appropriate testing.

They can't really say no. If they do contact PALS.

Here is a link to a team at St Thomas's Hospital in London who are researching into diagnosing microvascular disease.

At the bottom of the article you'll see the contact details of the researchers. You can contact the team directly yourself.

isrctn.com/ISRCTN94728379

I'll PM you with the name of the Prof at St Thomas's Hospital.