Permanent resident of "Limbo Land"

[4happygnomes]

Had my last Neuro consult yesterday, he is "fairly confident I don't have MS" as the Mayo did an extensive work up on me and nothing was found on the mri's or tests. I really tried to push for a 3t mri of my spine as that is where I'm concerned lesions are hanging out, but he wouldn't proceed with it saying that although the strength is higher, it also brings up other "artifacts" that wouldn't be useful.  

According to him, I have the same probability of developing ms as "the average Joe".  However, the "average Joe" didn't have the big fall in May 2014, have all these symptoms that correlate with a ms diagnosis, and have a vestibular deficit!  Ugh!

Had to hold my tongue on 2 comments that he made....my reflexes were insane, left more than right but according to him " they are exaggerated but not pathologically so and that generally speaking women my age tend to have hyper reflexes".  And,  " I am getting out of the age when most people are diagnosed and I live in a state where it's not that prevalent -1 in about 500!!!, so that should provide me some relief"

He is prescribing gabapentin to help with the pain I've been having in my left leg (but why, or WHY do I have pain in my left leg??!!).  Not real excited to start it as I've heard it can turn you into a zombie.

And, well...that is that.  Meanwhile, in the "real world"...woke up today with my left leg feeling so tight it feels like it could snap in 2.  

I'm tired of the crazy!!
Karen

[cjtmn]

Hi Karen,

It's been almost a year since I've been on this board and was saddened to read that you feel no further along than the last time we corresponded. Based on some of the comments, I wonder if seeing a new doc is a good idea. Those are really strange comments and not at all comforting when you are the one dealing with the issues.

Wishing you all the best. I hope you can get some answers.

Cheryl

[4happygnomes]

Hi, thanks for your response.  No, nothing else has been brought up as an explanation.  I have a great internal medicine doctor, who has done a bunch of blood work, and is just as perplexed as I am...and is following along similar guidelines that if anyone could figure this out, it would have been the mayo.

So, this morning, woke up with serious tightness, now have serious left leg weakness.  So unpredictable!  

Thank you, banking on luck and a miracle to get through all of this!

Hope you are well!
Karen

[Joiedecour]

Hi Karen, I am sorry that you are not getting answers. Has any identified the origin of the issues as neurological? If not then is there a possibility that they are muscular or something like that? In other words if the neuros are not finding answers maybe another specialist would? Have you tried a good internist?
Having said that, it is nonsense to bring in age in as an explanation in your circumstances. I might not have been so good at biting my tongue.
In any case, I feel for you. Good luck.