New Diagnosis of Cardiac Sarcoidosis

[3Squirrels]

A month ago I started to have symptoms of shortness of breath and dizziness on even the slightest exertion.

I was admitted to Hospital with complete heart block and suspected heart attack but after all usual tests and scans showed no problems, I had a Cardiac MRI which shows I have Cardiac Sarcoidosis. I’m told it’s rare and the doctors so far have not been able to tell me much. I am waiting for a referral to the Brompton Hospital in London where they have the specialists.

In the meantime I have had to have a pacemaker and ICD fitted to solve the arrhythmia symptoms.

Does anyone else out there have Cardiac Sarcoidosis and any experiences to share?

[Calliope153]

I hope someone has given you this link already.

sarcoidosisuk.org/

I believe there is a helpline and lots of information and support available.

Best wishes.

[3Squirrels in reply to Calliope153]

Thank you Calliope153 I will take a look 👍

[MichaelJH Heart Star]

Hello and welcome to the forum! I have no real knowledge of the condition. However someone I know has Lung Sarcoidosis. There was a problem diagnosing the problem and they were referred to the Royal Brompton. They now have a diagnosis and are receiving treatment. You will be in good hands!

[3Squirrels in reply to MichaelJH]

That’s nice to know, thanks

[Dolphin14]

I know quite a bit about cardiac sarcoidosis

Message me if you like.

[Helen_BHF in reply to Dolphin14]

Hi Dolphin14 - just wanted to let you know that we need to be careful about offering medical advice to others on the community. I know 99% of the time it is well meant but we need to make sure conversations aren't happening in private messages that should be discussed with a health professional. I hope that makes sense! You can read more on our community guidelines here healthunlocked.com/bhf/post... Thanks!

[Dolphin14 in reply to Helen_BHF]

Makes sense thank you

My response was based on personal experience. My husband had cardiac sarcoidosis.

I hope that is ok to do?

If not I apologize

[Helen_BHF in reply to Dolphin14]

No problem, yes of course

[Dolphin14 in reply to Helen_BHF]

I just edited my response and did add in my husband had cardiac sarcoidosis.

I just didn't want my answer posted on the forum.

[3Squirrels]

Hi, I just wanted to say thanks to Dolphin14 for sharing her family’s experience. It’s good to know there are others out there who understand that it can feel quite lonely when there’s not much information available.

Rest assured I haven’t taken anything shared as medical advice!

[BongoBanana]

Hi I have just joined this site. I had full heart block last summer and had an emergency pacemaker fitted. My cardiac consultant in London was confused as to why it had happened so decided to investigate for cardiac sarcoidosis. This ended up being diagnosed by an EBUS scan. I have it in lymph nodes too. I was whacked on 60mg prednisolone on a reducing dose and I am now on 6mg a day. I found out today that my recent PET scan results show an improvement and I can stay on 6mg. In the meantime I got pneumonia at Christmas (or was it Covid19???) and developed AFIB. I had to go on Edoxoban and Bisoprolol. I am now off of the Bisoprolol. So am making progress but waiting for a cardio version. I work from home so have not missed a day (apart from hospital trips) and survivng lock down as I don't have much energy but generally feeling more positive.