Tossed into limbo land?

Wow...I'm still trying to wrap my mind around this.  I was diagnosed with MS in May of '09.  I obtained a 2nd opinion because my symptoms weren't slowing down, and I was wondering if I was going into a progressive phase.

After seeing an MS specialist at UCSF, she told me I don't meet criteria.  My SSEP, LP, bloodwork, OCT, C-Spine and T-Spine MRIs are normal.  My brain MRI has only a couple of suspicious lesions in her opinion.  The MRIs haven't changed in 2 years.  She seems to be leaning toward a C-Spine compression problem.

I've read 2 opinions that C-spine myelopathy CAN cause bilateral Babinski and hyper reflexes, and absolutely do NOT cause bilateral Babinskis and hyper reflexes.  And what about my ataxia, occasional TN, dizziness?

In the mean time, I've taken Rebif and 9 infusions of Tysabri.  Pretty potent stuff.  Both my general neuro and the MS neuro want to take me off the Tysabri at the end of the year for at least a 3 month break.  I'm fine with that - one less scary drug to worry about.  

I expressed my worry about another relapse, and the MS neuro said she understood my worry and frustration, and that her lack of definitive answers were a source of frustration for both of us.  Meanwhile, my general neuro still says I have a demyelination process going on.

I still feel weak, exhausted, have crazy paresthesias, spasms, etc.  Sigh.....

[zenhound]

Good grief, it just never ends does it? Seems like when you get things figured out someone takes that away from you too.

Sorry you're going through this. I have no advice, am a limbolander, but just wanted to extend my sympathy because that has got to be awful.

[sllowe]

Wow is right.

What a sinking feeling I got as I read through this.

One of my fears when I was dx'd was that the HNP and other issues in my c-spine caused all I were dealing with. In the end, it just didn't account for the demyelinating in my brain and spine.

While I can't speak to the lesions in your brain, the thing that stands out to me most is your c-spine is normal. How can this then be blamed on c-spine compression? Did the doc elaborate any further than this?

Gosh G-girl. I'm sorry this is happening. My MRIs were unchanged 2 yrs in a row, fwiw. This very topic was brought up recently because another member's doc removed or discounted original dx after stable MRIs (I believe they were on DMDs too).  

Wait til the gang see's this....Oh my.

-shell

[Lulu54]

Sorry, but WTF?  I am amazed at this - especially since you have been on the Tysabri.  What do you think about this latest turn?

[sadie405]

Goodness--  you must be so disoriented and frustrated.  Hang in there.

[luvsummer]

I am so sorry this is happening to you.  This is awful.  I was going to post a question asking if forum members thought 'MS Specialists' usually get it right, but no need now.  

I have had my dx taken away twice.  There is no advice to offer you except to hang in there and I hope you do not have to suffer much at the hands of this silly doctor!

Luvsummer

[wiggles94]

Hi guitar,
I am going through a similar situation.  As long as there isn't a definitive way to dx MS, I guess this is what happens.  AND it makes you realize how much the docs STILL have to learn about this disease and how much WE need to learn so we can make sure to be our best advocates and know the right questions to ask.  Makes you wonder if you get a dx, should you seek a second opinion?  I still think that's prudent as this is a lifelong disease, and treatment.  Hang in there!

Good luck to you and all of us who thought we knew what we were doing but now are left wondering???? WTH?

Carol

[meg321]

This must be frustrating to you, I know there is a stronger word, but cant think of it now.  I am too sick to think on this, sorry.

So what do you do now ?  What is the next step for you ?

hugs, meg

[Sumanadevii]

WTH?  I sure wouldn't take her words without yet another opinion!!!!!!!!!!!  How does she explain away the other symptoms?  They just appear out of the sky with no reason??????  I hope your frustration makes you angry!!!  Real real real angry thus making you MOVE ON IT and find another neuro.

[supermum_ms]

Now see, this just doesn't make any sense to me at all, ok sure there will be people dx with MS but over time their dx will be more obviously something else, so they loose the MS dx and get a dx of one of its mimics, fair enough. What totally takes the cake is when the MS dx is removed and no logical alternative is given to take its place, and i do mean logical, not a dx that has a bit of this and a bit of that but leaves everything else that doesn't fit, left out in the too hard basket!

I'm Gob smacked, i think it stinks that your in this position, would it be worth going back to your other neuro and saying "My MS dx is in question but the explanation for all the sx that i have which ARE explained with a dx of MS, are not explained by the dx of 'C-spine myelopathy' so can you please help me work out why I dont still have MS?"

Like everyone else, i'm shocked!!

Take care..........JJ

[Rena705]

I have to agree with Lulu...WTF?  I don't blame you for being upset girl and I don't know what to suggest really....
I just can't understand how they can put you on those DMD's and then tell you that you don't have MS so they are taking you off???  Personally, I would think in this situation your Neuro should bring in a second opinion on his own!  If he can't figure it out it would be in the best interest of the patient I would think to get another doc's opinion.

However, I know as well as most of us here do, that neuro's for the most part don't seem to be interested in the patient's well being but it might be worth your while to bring up the subject of a second opinion and the possibility of this neuro arranging it??  I hope that you don't have to start all over again to get some results honey and a second opinion would help you avoid such a situation.

I am so sorry to hear you having to go through all of this...please let us know what you decide to do...we have your back here!

Lots of understanding Hugs,
Rena

[HVAC]

Personally I would go for Neurologist number three and may be more. My PCP sent me to a third one when the 2nd Neurologist said no way is it MS after the 1st one said it was.

Hang in there.

Alex

[Guitar_grrrl]

I'm sticking with the first guy!  He's geographically closer, he's fairly confident, he's old, and he's seen it all!  I'm just so dang sick of the process, and at this point, I just want to keep the strength I have left.

Thanks, everybody!

[twopack]

I understand completely that this can and has thrown you into a spin BUT.....

a second opinion is just that ---  an opinion.  I don't see how a doctor asked to see you on a consulting basis to offer a second (or third, or fourth, etc.) opionion can 'take away' a diagnosis given by a primary physician or consultant.

You asked for this doctor's opinion of your case.  Opinion was given.  Thank you and good-bye.  You are under no obligation to accept this opinion, especially since it contridicts facts in your case and your treating physician hasn't been convinced to reconsider her diagnosis.

I had insurance once that covered the cost of second opinions but the physician offering that service was actually prohibited from doing any surgery or prescribing any treatment connected to that consult opinion.  This policy was thought to be a safeguard to guarantee less bias in the review (based on potential profit).  It did have merit but was the pitts if you ended up meeting a doctor you really liked from a second opinion contact.  You had to wait for a new problem developed.

Sometimes our best intentions do seem to backfire.  People must think we are crazy!  Of course we are.  The doctors drove us to it!!!

Seriously, this just goes to show us that, with MS, there are no 'right' answers (even when it seems a simple yes/no answer would do).
We will keep you surrounded with good thoughts here.
Mary

[Udkas]

What can I say, I have been around on this forum for a long time now, and followed your story/diagnosis.
I send you hugs!!!

Udkas.