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Multiple Sclerosis Community
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961762 tn?1265229711

the rug was pulled out from under me....

i thought i had it all figured out - now i am so lost.

i've had a ton of tests - bloodwork, MRIs, spinal, evoked potentials, neuropsych, etc.  my symptoms are not bad - i stare a lot, a bit of balance trouble, some word recall/memory issues, etc.  i also have 4 very small and non-specific lesions on my brain and one that could be considered an MS lesion.  everything was ruled out so i went to an MS specialist.  he recommended that i have a bubble echocardiogram to check for a hole in my heart.  they found one and i was so happy that this was discovered and could be causing my symptoms.  i went back in for a follow-up to determine how they were going to fix the hole and this doctor couldn't find one.  this is all this doctor does and he said i don't have a hole....which basically sends me back to the MS doctor.  i was SO UPSET over the weekend as for a couple of months all i thought about was having this hole, how i was going to have it fixed, how that was what was causing my symptoms, etc.  it just all made so much sense.  now,  i really feel like i was kicked in the teeth, like i don't know where to go and what to do.

i mean, and i know this is a silly question, but how do you know if you have MS?  it's been so maddening to go back and forth.  i mean, do you treat it just in case it's MS or do you wait and see if things get worse.  i have no idea what to do.  i know many of you are in limboland or have been there and probably have felt like i do.  i feel like i am wandering around aimlessly.  i am so SICK of waiting 6-8 weeks for each appointment and thus drawing out this process more and more.  

sorry, i am just really frustrated, mad, lost, something.  thanks for listening and welcoming me back here.  i haven't been around because, honestly, i thought i didn't have MS.  now, it looks like that is all i have left.

R
9 Responses
279234 tn?1363105249
Welcome Back! I just wanted to stop by and tell you that, I'm sorry your going through this and I know how you feel. Limboland is not for the weak of heart, is it? It tries on every fiber of your being. It makes you want to pull your hair out and scream when you think you have the answers and then, BOOM, nope. Not today.

I know that you are wondering aimlessly, but there will be an answer for all of us, one day. I have to believe that. I've never been known for my patients, but I've had to cope with this. I wish our answers would come easy, but for some reason they don't.

I'm glad your back, anyways. (You do realize, once a member, always a member). You'll find your support system here, like you've never left. Gentle Hugs!

Take Care & Hang In There
648910 tn?1290663083
Ditto to everything SB said. I am another who wonders limboland.  I wish there was a test or something to make dx easy but I am afraid it is not so.

Take care and live well,
we are here for you,
terry
667078 tn?1316000935
I feel your frustration. I was looking at the notes from all my doctors over the years. Each note seems a contradiction from other notes. It is frustrating not knowing.

I described my experience with diagnosis as "Going down the rabbit hole in Alice in Wonderland". I was so confused being sent from doctor to doctor and having conflicting statements. There are over 800 neurological disorders and 33 mimics to MS. My two years of testing drove me nuts. In my case it was the LP which was the last piece to the puzzle. For others the test comes up negative.

In my case the only thing that would have gotten me a diagnosis faster is if they had done the LP two years earlier.

This is not an easy diagnosis and it takes what it takes. Ironically not much has changed since my diagnosis. I still only see a Neurologist a couple times a year for 15 minutes. I am on a DMD but no other medications to help MS. I am still progressing at the same rate. I get weaker and weaker little by little and have more symptoms.

Alex
572651 tn?1530999357
Dear BabyAtlas, that is quite the reversal on the diagnosis.  I'm sorry I don't remember who made the initial dx of the hole in your heart.  Now that you have two totally different opinions, do you think you need to have a third?  

That is quite a dx to reverse and I would be questioning the doctor who sent you that direction.  

Just remember that having MS is not a death sentence, and is definitely something we can usually adapt to and function quite well.


We're here if you need us - we'll look for you around here.

be well,
Lulu
961762 tn?1265229711
thanks so much - i just feel so lost.  i just keep crying today, as i have been since friday.  sometimes i think i am just being silly because, as lulu pointed out, it's not a death sentence.  but then i read things online about the progression of the disease, about the medication, the side effects....well, it is all scaring the pants off of me again.  

i am looking into the hole in the heart diagnoses.  i called for a copy of the report from the first cardiologist and once i look at it, i will be calling the cardiologist directly and asking for an explanation.  when i was in the room for the first bubble echo there were 2 techs and a cardiologist in there telling me that there was a hole.  the cardiologist asked me my symptoms and when i described them to her she said "the hole could be causing your problems".  i was elated!    the second cardiologist is the one i went to to have the hole fixed as this is his primary focus - he finds and fixes these holes.  he did the bubble echo again and something called a transcranial doppler.  both of these tests couldn't turn-up anything.  he said that cardiologist who do not specialize in this sometimes misdiagnose or aren't as skilled at looking at these results as he and his staff are.    

thanks for the hugs and thoughts.  my mind is so scattered today, i almost feel like i am decending into maddness......
R
807129 tn?1245273527
Oh, I am so sorry things are so frustrating and scary, and I TOTALLY know how you feel.  I have been a Limboland resident for 7 years now.  I also had the hole-in-the-heart test, but alas no hole for me.  It would be really nice to just have an answer, whatever that answer may be.  I can only imagine how hard it was to have that feeling of having an answer taken away from you.

And I just keep hoping something will turn up, something, anything, so I can just make a decision about what to do.  With my new CIS diagnosis, I have the freedom to take a DMD if I want to (which is what I wanted, just this freedom), but now I am too chicken to make up my mind.  I just keep wanting some better evidence.  And my symptoms are mild, like yours, which makes it harder to take the leap to DMDs.

The way I have been able to cope is just to remind myself each day that I feel fine, good in fact...so I am really lucky.  And I try my best not to worry and not to think about it, because the worrying actually makes me feel worse (which is why I've been mostly MIA lately).  

Maybe some day this disease will hit me, but it hasn't for 7 years.  I've had the same lesions for 7 years, no new ones, and according to the research, 80% of folks like me will have developed clinical MS by this point.  So I could be one of the lucky ones.  But I also realize I could be making a mistake by not taking the meds.  

So, I agree, it can be maddening, and I am hoping for answers for you really soon.  More hugs,
Laurel

405614 tn?1329144114
More hugs from me...

I'm the one that had a bubble echo that ruled out a hole in my heart; I hope my cardiologist was good at reading them.

You can't be lost, 'cause we're all here with you.  You can't descend into madness, 'cause we don't allow that, either, ha ha.  Actually, for all of us who have felt like it, I don't think any of us actually have.

I finally found the right MS specialist and am diagnosed, injecting myself weekly with Avonex.  I still feel mixed up at times, but mostly I feel relieved.  I feel that answers are better than no answers.

I asked my neuro if I had a firm diagnosis of MS (doubting, doubting), and he said "of course!  You wouldn't be on Avonex if you didn't.  I'm working towards acceptance.  Three other neuros and many specialists didn't find evidence enough to call it MS, but now I Have MS.

Lulu's so right, it's not a death sentence.  The side effects can be managed, and after 3 months, mine are pretty much fading.  No matter what's going on with you, we're all here for you.  Remember that, and do something that makes you feel good, like listening to some favorite music, watch a funny movie, eat something super yummy, whatever you can immerse yourself in and let worries go for a while.

Hugs,

Kathy
961762 tn?1265229711
i love you all - really.  here i thought i had MS, then thought i didn't and now i am back thinking i have it.  it's such a roller coaster and i know i don't need to tell any of you that.  so, thank you so much for your kind words, advice, anything you are writing today is giving me hope, helping me not feel alone and giving me strength to start searching and asking the questions again.  yes, i am scared - really scared - but glad to have a group of people to talk to who understand.  i know i am not dying.  i will live and i will be there for my children.

i dont know what else to say besides thank you, and you know, that just doesn't seem like enough.
R
Avatar universal
Hi atlas,

You're definitely not alone in your frustration, but we're lucky to have th is group for support. Ithas definitely lifted my spirits many times.

I don't think we've met, but I'm going through a similar situation - except for with me, it's not about a hole in the hear but a problem with where my skull and spine meet. I have two doctors saying it could be the culprit for all my symptoms and two saying there's nothing wrong there.

I was so hoping that when my MS specialist saw this on my MRI that it would finally be an answer - one that could be fixed with surgery. But now that may not be the case. She's getting a second opinion from another neurosurgeon before I see her again Thursday, but it may be back to "ruling out MS mimics" drawing board.

After two years of this, it gets mighty hard, but like the others have said, we must have hope that we will find the answers.

Best of luck as you continue seeking those answers - and remember we are here when you need us.

Cassrox
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