Yet ANOTHER disappointment...

[jenandherboys]

I was so excited to see a new neuro today.  Surely a doctor at the esteemed University of Wisconsin Hospital would have the experience with atypical neuro patients to figure out what is wrong with me-or at least be able to provide insight and a plan for the future.  

Not so. She asked me to narrow down my 2-page list of symptoms to "just the most concerning/bothersome."  She asked if I ever wasn't able to walk...I say almost, but I HAD to work, HAD to take care of my children; walking was very labored, painful, difficult, extremely slow... "But you never COULDN'T walk?" and she apparently dismissed any of those symptoms.  The same with my arms..."But you never COULDN'T lift things?..."Have you seen a urologist for your bladder symptoms?...Well, at least you don't have any symptoms right now!"  Then came the inevitable-"You don't have MS; I have no neurological diagnosis for you, I can't GIVE you a neurological disease."

What should I do next? "I'm only a neurologist, I can only say if you have a disease of neurologic origin. You don't. You should go back to your primary care physician(PCP) to discuss what he thinks you should do next."  (Lather, rinse, REPEAT-again, and again and again.)  

Did I stutter?  My PCP sent me to my local neuro, who sent me to her.  How is going back to him supposed to result in some other epiphany-"Oh, well, since your symptoms are exactly the same as before, why don't we just pick a specialty out of a hat?  That's sure to get us going in the right direction this time!"

The only up side is that I can check them off my list-been there, done that.  Now let's get on with seeing the people who care and obviously want to get to the bottom of what is taking over my body. Her last, cursory suggestion was that some people with such disparate symptoms go to Mayo since they can see multiple specialists in one visit.

I guess that's what I'll be discussing with my PCP tomorrow.

I'm totally exhausted, frustrated, disappointed and infuriated. But, at least I wasted my time with her today, instead of two months from now(got to be a silver lining somewhere).

Goodnight and be well.

Jen

[MonkeyMom4]

I too can relate. It is exhausting and frustrating.

I have a neuro who is trying to get answers for me...but seems to be 'passing the buck'...I'm scheduled for a sleep study next for goodness sakes...they're thinking 'silent seizures in my sleep' or even...get this....narcolepsy. I laughed when the doc told me that today.

Oh well, seems I'll just keep doing what they tell me to...maybe it's just part of the 'ruling out' process.

Good luck..take a deep breath...and SCREAM!! LOL...

How old are your kids?

I have 4 kids...oldest is 5 1/2 and youngest is 5 months.  

[Sumanadevii]

For me personally?  I found it humiliating to look at my friends and my children with the excuse, "I can't" due to a pinched nerve.  A pinched nerve that put me in a wheelchair for any distance, that sapped all my energy and robbed me of so many family traditions.

Yes, eight years later it was nice to finally be able to say...this is why.  This is why instead of "I am so sorry" and beating myself up.  I felt it was my fault and I had some how failed...and miserably so.

[michelleislay]

it seems so hard this process.  i have no diagnosis and a neuro who won't take me seriously, too.  not good times!

not that we want to have a neurological disease, but we would like some answers.  something is not right, we know it, and we'd like to know it's name so that we might try and go about understanding and possibly helping ourselves the best we can through the situation.

all the best to you and please keep in touch!!!

xo michelle

[jenandherboys]

Thanks for the kind thoughts, it really means a lot to find people with similar stories who can help pick me up after such discouragement.  I suppose misery really DOES love company!

I guess I'll check in with my primary Dr. this morning and go from there.  I'll keep everyone posted.

Be well!

Jen

[callalilybeauty]

Jen.  I hope you find your answer soon.  I'm stuck in the same boat.  At least I don't have small children.  My youngest is 11 now and Boy Scouts has taught him how to cook scrambled eggs and make Ramen noodle.  So, at least I'm comforted in the fact that he won't starve to death if it ever gets that bad for me, lol.  Seriously though, I things look up for you soon.  Stay strong!  Nikki

[Sumanadevii]

You know, when I begin to feel sorry for myself, I find a post here by a young mother and it breaks my heart.  I didn't have problems with MS until my youngest was in middle school.  How you are able to cope...I don;t knowl!!!

I too had a neuro that sent me to countless other doctors.  I began thinking he was just passing the buck.  He was too lazy to really look at me and find the problems.  

I am so sorry for the added stress and hope you find the strength to continue your battle for an answer.