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764912 tn?1322711843

Confirmed a stroke

Hey all,  Well I am still at Mayo clinic in MN.  They did confirm a stroke and did a TEE--to look at my heart.  Today I  have neuropsych testing due to memory and change in personality issues.  Then Tues I see my Neurologist again.
I sure hope we get some road to take....thinking of you all.
Hugs
Tracy
15 Responses
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764912 tn?1322711843
I am glad I have you all....You sure are going thru a lot, and it is so frustrating when you have to fight and others give up.  My husband and I were talking about that the other day and I told him if I am not well and still fighting you think the Drs could do the same.  It is my firms resolve to dump all Dr with no tenacity. LOL:)

Wanna....Thanks I am feeling better.  I am glad they did check for a hole in my heart, none is there, they did a TEE, the go down your throat with an echo.  You are in my thoughts, and I hope you have relief soon.  Please keep me posted.

Mrs A.      You need boredom in your life for 2 months at least, that is my prescription. :)  You are a gem, and don't you give up keep pushing like you are.  
Hugs,
Tracy
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Avatar universal
Maria...it is exhausting to keep looking for our own answers, isn't it?  I am quite the fighter, but I was at the point that had I not found a cardiologist who would step up for me, I honestly was ready to give up.  

Two days ago, I had a seizure/collapsing episode at work that actually scared ME.  It was one of the few that have had that effect on me.  As I was in my episode, I could not speak, but I could see and I was aware of people around me (which is the usual).  

My problem was that I was having trouble breathing, by breath went out and I was not getting it back in.  I was telling myself to breath, trying to get the air back in, back out, back it, back out...it was slow...trying to stay conscious.  I usually stay conscious.  I never have to talk myself out of an episode.  

The thought occurred to me, this is it, I might check out.  I've never felt that way before.  Kinda scary.  I'm not ready!  I guess I need to keep fighting, no matter what.

Tracy...I hope you are feeling better.  I have had people swear up and down what they see I am having is a seizure, and it does look like a seizure, but it is a mimic, not a "true" neurological event in the brain.  It is from a lack of blood flow or oxygen to the brain.  Also, this caused the TIA events.

Once the hole in the heart is closed the seizure activity should stop.  Sounds crazy, but I am sooo looking forward to that outcome.

I hope they give you answers SOON!!  No one should have to linger with these issues.  Please keep us updated!!!!!!  My thoughts are with you.  Have a Happy Thanksgiving!

(((HUGS)))
Wanna :o)
  
Helpful - 0
551343 tn?1506830518
The problems with the doctors is once you start going in for one problem everything belongs to that one problem even if it doesn't.

I do worry that this is happening to me.

I can hardly walk today without the weirdest pain in my hips well not my hips more my buttocks really, but I know if I rang my doctor she would put it down to nerve pain so what is the point.

They are just focused on one thing.

My poor old dad was really ill at one point. He was one of the service men who was in xmas island TWICE when the hydrogen bomb tests went off.

He started to get sick not long after really. It took years but the MOD finally told him he had Lupus. They told him Lupus because he couldnt SUE for Lupus. Sorry for being cynical but it is true.

His symptoms were weird.

I can remember his legs going purple spots which can be Lupus.

Then one day his legs SPLIT the skin it was horrible and he was always in pain.

Finally he was also diagnosed with gout.

Then he got more sick and they just told him it was all down to his Lupus, and his kidneys started to have problems.

He was taken into hospital to have his kidneys checked and they did further tests.

They found he was suffering with Cryoglubulinemia. Perhaps if they had taken more notice of him his kidneys would not have been quite so compromised even though this can happen in Lupus it can be worse in cryo.

Its quite normal for someome with one autoimmune to have another.

Endometriosis for example is an autoimmune disease and many women are diagnosed with it, and there is a link to endo and women going on to get Lupus/MS/RA as well.

Doctors need to look outside of the box sometimes.

At least you both are now getting answers even if it has been a slow progress it shouldnt happen its all wrong.

Big hugs Mariaxx

Helpful - 0
764912 tn?1322711843
Thank you so much.  Yes my providers here are stuck in the Migraine mode, even though they can see a stroke.  So I went out side to a larger hospital too.  I really feel a little better as I think they finally recreated on a small scale what has been happening.  Plus they Dr seems straight forward and not stuck on something.  I bet seizures is correct since that it is consistent with my research, my 12year old son came home from school and said "mom I think you have seizures" after a nurse came to talk to them about Epilepsy.  My GP also mentioned Absence seizures.

Hopefully we are on track now.
I am glad you have some relief, it isn't profitable to blame the nearest thing, is it. Sounds like we are in the same boat, I have dealt with a couple auto immune things too.
Hugs,
Tracy
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Avatar universal
Hi Tracy,

Just wanted to weigh in here since I have been on a crazy ride like you...was told I was having TIA's, then told they are seizures due to Lupus, and also told I had probably had some form of autonomic dysfunction.  

When I finally got p***ed off due to the guessing going on due to the lack of care by one doctor involved in the group various of specialists I was seeing,  I took my test results out of that particular (BIG) hospital, and to a new (local) cardiologist and he figured it out.  New eyes helped.

What is happening to me is heart related, looks like an "absence" seizure, the cause of some of my neurological symptoms, I am at risk for a stoke and very well could have had two TIA's because they are documented as such at the hospital.  The problem I had was they kept trying to blame the autoimmune disease rather than take it out of the autoimmune box.

I collapse and have these episodes regularly.  It was such a relief to be able to tell my coworkers that in January my heart will be fixed and the collapsing episodes will finally stop.      

Anyway, my heart does out to you and I hope you find an answer soon.  I hope they don't put you through endless testing and they figure this out for you soon!  An answer feels soooo good!!!  

Hope you are feeling well.  Good luck to you.  

Wanna :o)      
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764912 tn?1322711843
Yep Dr called and said the Neuro-psych wasn't normal, I should have been able to do better in some areas, did really well in others, so they will rerun it in 6mnths.

Also he thought it was time to try Keppra a seizure medication.  Since they don't want you to have a seizure while awake they kept me from it even though I was sensitive to the patterns.  They will rerun an EEG in 3 months and hope I sleep which will help us know more about it.

Hugs,
Tracy
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1116021 tn?1258838263
CAN YOU KEEP ME POSTED ON YOUR MAYO EXPERIENCE?  I AM SCHEDULED TO GO THERE AFTER CHRISTMAS AND NOT SURE IF WILL BE A WASTE OF TIME AND MONEY AS I JUST HAD MRIS OF BRAIN AND SPINE WITH CONTRAST AND A TON OF BLOOD WORK DONE AND AM SCHEDULED FOR A SPINAL TAP ON TUESDAY.  I WOULD APPRECIATE YOUR TAKE ON THE "MAYO EXPERIENCE".  THANK YOU. KK
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764912 tn?1322711843
Thank you everyone!  No I'm not Mayo but should hear from them soon, and can go back.
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551343 tn?1506830518
Hi tracy sounds like a seizure doesnt it. Are you still in the Mayo?

So your symptoms are not stroke related which I suppose is something but if not a stroke then what is the question.

I was worried about you but glad you have posted.

Keep us informed, big hugs mariaxxx
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764912 tn?1322711843
Oh my, ii has been an experience.  I feel so selfish, how is everyone else?

Well, the Dr said I am not having anymore strokes so there is another cause of my symptoms.  He had an EEG ran and it reproduced my symptoms.  The Tech showed me a check pattern/picture and I thought it began to look strange sort of 3-D then I lost all memory of what happened---she must have left the room to get another tech and more patterns.  It was as if I was waking up and getting my bearings, when I saw myself on video and heard the other tech say he was taping me now.  Then they showed me more patterns, and wouldn't let me hold them this time, and she told me later to tell the Drs I was sensitive to all the check patterns.  I got sick to my stomach and lightheaded, then she would make me close my eyes until it passed.  Maybe a seizure?

It has  been a crazy ride...I hope all of you are well.
Hugs--and lots of them to Mariaxxx
Tracy
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551343 tn?1506830518
How did it go today Tracy? hugs mariaxxx
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764912 tn?1322711843
Thank you all......Yes, Mrs A I kindof thought that is what I would hear, because my family Dr keeps saying it but can't get Neuro's in my area to confirm it.  

And yep, I still need more answers so we will see what happens today.  I should hear about the results of the tests they ran.
Keep you all posted, Thanks so much for the support!!
Tracy
Helpful - 0
551343 tn?1506830518
Hi Tracy oh my was that what you were expecting? At least it sounds as though they are really giving you a good going over.

My thoughts are with you i hope everything goes ok and you get all the answers that will help towards the road to recovery.

BIG BIG HUGS MARIAXXXXXXXXXXXXXX
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956292 tn?1334054869

Good Luck to you..I will keep you in my thoughts and prayers ..I am somewhat of a newbie here and have found such great support and advice from the lovely members of this forum. I hope everything works out for you and you get on the right path!


Be Well
Jib Jen  ;o)
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Avatar universal
Goodness, what a lot to take in. I am glad you are moving forward but you still need a great deal answered...

Thank you so much for the update. Do continue to let us know how things are going at the Mayo Clinic.

Sending lots of support as you undergo your tests.

Stay strong :)
x

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