HCM-ers: Introduce yourself or just say hi

@ache6941 if traveling to Mayo Clinic in the US is an option for you, you can submit a request here: http://mayocl.in/1mtmR63

For care closer to Ethiopia, you might have options with the Mayo Clinic Care Network. The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist.

See hospitals associated with the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

In particular:
Saudi German Hospital Cairo https://sgheg.com/sgh/#/sgh/en
Egypt

Saudi German Hospital Riyadh https://riyadh.saudigermanhealth.com/ar
Saudi Arabia

International Medical Center https://www.imc.med.sa/ar
Saudi Arabia

Hello @jachrist,

You may find the following discussion helpful:

- Stiff Person Syndrome: Want to connect with others
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/
@jachrist, how are you currently doing with your symptoms? Have you had your appointments yet? If so, how did they go for you?

Good evening everyone. I am Leo from London. I was diagnosed with OHCM at 38 years old over 2 years now (hereditary but no history of diagnosis or SD in family). I am so pleased to learn of this group and looking to be apart of it. I have done a lot of reading don't know anyone else with the condition.

Hello there Leo @ochmnot22, and a warm welcome to Mayo Clinic Connect!
I am so glad you found this site. You will find a lot of information from other people with HOCM on here, and learn you are not alone. That is such a great feeling, because like you said, you don't know anyone else with this condition.
You mention you were diagnosed two years ago...were you diagnosed right away, or did it take time to find the correct diagnosis?
Are you an active person? How has having HOCM affected your lifestyle?

Good evening Leo! So glad you found this site. As a HOCM patient you need to have other relatives get echocardiograms to see who else in your family has this hereditary disease. Adults who are negative need to be tested every 5 years. Kids under 18 need to be tested every year. Nobody knows when they will show signs of being positive for HCM.
I was 67 when I was diagnosed, but my breathing was labored for many years and was miss diagnosed as being an asthmatic. My Father was miss diagnosed with labored breathing and it was blamed on cigarette smoking.
Please have all of your relatives tested for HCM. Once I was diagnosed, other relatives have also been diagnosed.
Best to You!!
Jim

Hi @karukgirl. Thanks for the warm welcome. I am hooked on the information here and just snowballing into other resources. In the year leading up to that I was feeling dizziness and syncope a few times momentarily. I had done a gall stone removal surgery a few weeks before that (Sept 2022) and was feeling great. I was back exercising and losing weight, doing intermittent fasting. Christmas day I did heavy cardio. Boxing day, I woke up feeling light headed, dizzy, faint, nervous- just couldn't relax. At the hospital my BP was very high and couldn't settle down. They called Cardiologist and that's where it all started. I had a high CK level and diagnosed with Rhabdomyolysis and had to return the next day to flush this out the blood since it didn't wash through sufficiently. That week, I went through a lot. In the end I did stress test on cardio, 24hrs & 1 week monitor, ECG, EKG, MRI, Blood test. I did feel scary palpitations a few times in the weeks after this however, this might be related to stress. I was away from the UK at the time. I was put on medication. I was then passed to a more specialist hospital and the entire process restarted. I had to return to the UK. Once I was here I had to again do over everything followed by genetic testing- that's 3 times doing the same diagnoses. After 9 months I went for check up- I think 1 week monitor and some scans. I should be back in a few months. I only get dizzy but I think that's because of bisoprolol in the morning. I do get tired during the week and after a long back and forth I have negotiated working 1 day/ week from home. I think I need to change career so I don't need to go out to work 5 days/week. I haven't had any palpitations since I returned to the UK. The only time I had palpitations was when I tested + for COVID in Nov 2024.

Hi @jachrist,
I have told my siblings- I need to remind them again. Not the one living with my living parent. I suspect its on the paternal side which I have no contact with.

Sorry to hear there is no contact, but at least being tested with an Echocardiogram is the best that you can do. There is a 50/50 chance that relatives can also be positive for HCM.

I have upcoming appointments at the Mayo clinic with my Cardiologist and with a Neurologist.
I currently experience periodic episodes of being light headed, dizzy, and at times it even affects my vision. These episodes are generally only seconds to a minute long in duration.

Leo,
HOCM or HCM can be at any age. I would suggest that you try to find out who in your family has this heart disease and get tested with an Echocardiogram.
Jim