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961762 tn?1265229711

did you exhaust all MS mimics? i have 2 totally different opinions.

so, i feel like i am back on the roller coaster.

in brief.  i had MS symptoms (a few white matter spots on my brain, fuzzy memory, staring, a bit of mild weakness in my right arm, minor balance issues).  all along everyone was thinking MS.  when i finally went to my MS specialist he wanted me tested for a PFO (hole in my heart) as it could be throwing little strokes/clots to my brain.  so i went to the local University Hospital (which is a top-notch facility).  i was told i had a hole - i was elated.  i called my MS doctor and his office said to go and see a different cardiologist at a different local hospital (another top-notch facility) as the doctor they recommended specializes in finding/fixing these holes.  well, this specialist couldn't find a hole.  he tried but couldn't.  i was crushed.  so i went back to the University Hospital last week to try to understand what they saw that made them tell me i had a hole in my heart.  the cardiologist at the U who specializes in finding/fixing these holes said that he is of the opinion that there is a hole, that something isn't right.  so he wants me to do a trans esophageal-echocardiogram (sp?) to explore this further.

so, if you were me, would you let sleeping dogs lie.  my husband seems to think that i am just setting myself up for disappointment again BUT, this is my body, this is happening to me and i guess, i feel like i need to exhaust all other possibilies.  

i have never had to deal with doctors much and am just floored that the opinions of these specialists are exactly opposite.  has this happened to you?  maybe not with a hole in the heart but with exact opposite diagnoses.  what did you do?

thanks,
R
6 Responses
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738075 tn?1330575844
PM = private message.Just go to your page, click "messages" and send me a message from there.  If you click "Notes", it's public.
Helpful - 0
961762 tn?1265229711
Guitar_grrrl....
sorry i am relatively new here - what is PM?  i'd love to talk to you more as i have received two different responses on methodology and results from two different cardiologists.
THANKS so much!
R
Helpful - 0
738075 tn?1330575844
The transesophageal echo (TEE) is really the best way to assess the presence or absence of holes (PFOs,ASDs, VSDs).  It's an art form in my estimation.  There are no ribs, lungs, muscle, adipose, etc., to get in the way of a super clear image.  I've been doing echos for 30 years, and TEEs for 20 of those 30 years.  

PM me if you want the salient details.  I can walk you through the procedure.  

Cheers,
Guitar_grrrl
Helpful - 0
984138 tn?1359813073
Definatly exhaust all possibilities is my opinion. Because it will always be in the back of your mind or the front! and will get to you. Be as theoro as you want as you said it is YOUR body.  I am diagnosed MS and still am checking every other mimic because I'm just that type of person and will not be satisfied or put at ease if i am not 100 percent theoro! My MS specialist is not to fond of this but my Neuro is on my board with me She said shes more then happy to do any tests id like as long as it puts me to ease and helps me accept  She doesnt want me wondering or being uncomfortable with the diagnosis.
Helpful - 0
961762 tn?1265229711
shell - thanks for your thoughts.  
my MS doctor sent me to find the hole and i choose to have it done at the hospital i had visited for my other tests (MRIs, spinal, bloodwork).  so went there, saw Dr. X and they found a hole.  i called the MS doctors office to tell them Dr. X had found a hole and the MS doctor's nurse told me that a different doctor at a different hospital, Dr. Y,  specialized in finding/fixing these holes and that, "if it were her" she would go and see this doctor to have it repaired.  why they didn't tell me to go to Dr. Y in the first place baffles me a bit.  so, I went to see Dr. Y assuming he would be fixing the hole.  well, he wanted to confirm size/position first (which is understandable) so he repeated the same tests at Dr. X and couldn't find evidence of a hole.  So, i called Dr. X and he still stands by his findings that there is a hole, or at least that something isn't right.  does that make sense....i feel like i am writing a soap opera?
R
Helpful - 0
198419 tn?1360242356
So your MS specialist sent to look for the hole, they found one and then he wanted a 2nd opinion on the find? Am I understanding this right?

If so, and it were me, the only way I'd feel better is if the possibility of this hole was exhausted thoroughly.  Then you can go from there.

Only thing you can do to not get overwhelmed by it all is take one of these things at a time and knock them off their "possible" list.

Just my thought - anyone else?
-shell
Helpful - 0
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