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961762 tn?1265233311

diagnosis - a hole in my heart :)

i never thought i would be happy to have a hole in my heart but, today i am.  i haven't been to the forum in a couple of months due to a crazy schedule and honestly, i've been in a funk thinking about MS.  i have white matter spots on my brain, i have foggy memory, trouble finding words, and vision problems.  i saw an MS specialist for the first time on monday and loved him.  he looked through all of the testing i had done (brain, spinal, cervical MRIs, spinal tap, host of bloodwork, neuropsych, etc).  he suggested two more tests.  an echocardiogram with bubble to see if there was a hole in my heart and some additional tests to check for a clotting disorder.  today, i had the echo and i have a hole.  both the MS doctor and the cardiologist today said that this could be the cause of my problems/symptoms.  i know this might not be the cause for my symptoms but the mere thought that it could be is making me cry tears of happiness.
so, i guess i am wondering if others have been tested for this.  or maybe you have a hole, had it repaired and still have symptoms?  i am just thankful today.  thankful for my doctor and thankful for your support over the past 8 months as i have dealt with my symptoms and countless doctor appointments.
again, i know this might not be the my problem but the thought that it could be is something good to think about today.
R
11 Responses
572651 tn?1531002957
R- You must have been very afraid of having MS to be rejoicing over a hole in your heart as an alternative diagnosis.  

Has your cardiologist scheduled an appt to discuss repair options for you?

Be sure and follow up on the treatment for this problem and don't delay in getting the repair done.  

be well,
Lulu
961762 tn?1265233311
thanks lulu.
it was not necessarily fear of MS but fear of the unknown.  the people on this board have been wildly helpful in educating me and also sharing their stories.  stories of how life goes on, you adjust and move forward.  i know that doesn't mean that having MS is easy by any means, but just knowing that it wasn't a death sentence was critical for me in the early stages of diagnosis and the symptoms presenting themselves.  this diagnosis doesn't mean that i don't have MS, but rather it means that there could be another cause of my symptoms.  time will tell.  
my MS specialist will order another round of tests next week to take a closer look at the hole - size, location, etc - and then a cardiologist will determine the best way to fix it.  
thanks again
R
751951 tn?1406636463
My youngest sister was born with a hole in her heart, and survived multiple surgeries as a child to repair it, then to repair the repair.  Against doctor's advice, she gave birth to two boys, both of whom are now adults.  She's still kicking, even though more repair was needed after each birth.

All in all, a hole in the heart not being the best news, it still makes sense that you'd be relieved to know that there is definitely something identifiable and very treatable that could explain your symptoms.  God be with you as you pursue the course from here.
405614 tn?1329147714
Very cool that you have an answer to start with, and will have further testing to see how best to deal with it.  I hope that it can be repaired without much trouble and that your symptoms are relieved once it is.  Maybe they can put you on a medication that can minimize it's effects until a repair is possible.

When my last MS specialist kept insisting my lesions and symptoms were from small vessel ischemic disease, despite no evidence to support that, I consulted with my cardiologist who had done and an ablation to correct a benign heart arrhythmia that was bugging me several years ago.

He thought she was nuts, based on my history and testing that he had done, and wrote to her and politely told her so.  He was smart enough to order a bubble echo as one final thing to rule out, which was negative on me.

I wish you all the best.

kathy

Avatar universal
I find this very interesting and I'm glad that your are ok with your dianosis.  The reason I find it interesting was that I was first dx'd with migraines.  There was a study done that showed that women that had migraines were more likely to have a heart murmur I believe.  My memory is not the greatest, so I might be confused about that.  Anyway, maybe there is a connection between heart/vascular issues and neurological symptoms.
Just thinking.  Anyway, let us know how things go from here for you.

Take care!
562511 tn?1285907760
I saw an episode on Mystery Diagnosis on a case about a woman who had MS-like symptoms for many, many years.  She was absolutely miserable and saw doctor after doctor with no firm diagnosis.  Turns out she had a hole in her heart.  There is a name for it that I cannot remember.  I believe it is something you are born with.

A bright neurologist finally diagnosed her, it was surgically repaired and she is fine.  There were physical clues that directed the neuro to the cardiac area. I think it had something to do with horrible dizziness.

It should be ruled out for the limbolanders.  Good luck to you and thanks for sharing.    
Avatar universal
Hi!  I had the same bubble test.  It's to make sure you don't have a patent foramen ovale (PFO).  This is something that everyone is born with however, it closes shortly after birth.  I'm undiagnosed but my first episode of "whatever I have" landed me in the ER.  The ER docs thought I had a stroke but since I was only 30 and in good health my PCP sent me to have the bubble test done.  If your PFO doesn't completely close it can cause all kinds of problems, including stroke.  Also, if you google PFO repair you should be able to pull some great info about how the surgery works.  From what I read it's minimally invasive and they go through a large artery in your leg to get to your heart.  Good luck!
147426 tn?1317269232
Wow!  Good for you!  You had a great set of docs that thought of this and did the proper testing.  Yes, we have discussed this on the forum, but not for quite a long time.  The tiny clots that pass from the right side (venous) to the left side (arterial) and then are thrown directly up to the brain cause little ministrokes that can really mimic MS.  This is one of those disease that should be thought of in the face of lesions that accumulate and never heal, a murmur (though not all people with holes have murmurs),  And there might be a certain location that these clots tend cause lesions in.

We pray that it will be repairable.

Don't be a stranger.  We need you to help reinforce that all that looks like MS is not MS and to be around to talk about having one of the mimics.

Quix
Avatar universal
My youngest has a PFO.  The cardiologist told me about 25% of people have it, and for most it doesn't cause problems.  There is a link to migraine.  Maybe I should ask about it...

Glad you found out!  (And mentioned it to us.)

Stephanie
867582 tn?1311630997
Congrats!  I'm so glad you got your diagnosis!!  I had the very same bubble echo test as you (for patent foramen ovale) last month and it, like all my other tests, was negative.
Good luck to you!!

WAF
Avatar universal
Thank you for shairng your experience.  I kind of have the same thing that you have. I crashed my car because of passing out at the wheel and it took me a year-and-a-half to figure out what was going on with me. I was also diagnosed with MS and had a large hole in my heart that I have had closed. Unfortunately my MS doctors believe that this hole cause my MS due to cell death in my brain. It's been about 2 years since having a hole fixed in my heart. I still have MS exacerbations. Just wondering if you still have MS now that you've had the hole fixed in your heart. Thank you!
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