So frustrated! 33 year old female with no diagnosis

[flamingo22]

Help anyone?! I am a 33 year old female. I started having weird symptoms about two years ago after the birth of my second baby. One day I bent down to shave the hairs on my big toe ( embarassing!) and realized I couldn't feel the razor. I also have had psycho bladder dysfunction (urgency, frequency....like i have to get up in the night these days....it seems to be getting worse with time) for that amount of time as well. Those two symptoms with the addition of a weird stinging in my back were the catalyst to getting me to a neuro. I have had an ultrasound of the bladder and kidneys (normal), an xray of my spine (normal), MRI's of the t spine, c spine, and brain (normal, normal, normal).  My neuro did confirm that I have peripheral neuropathy in my fingers and toes.

I have taken three different antibiotics in the last eight months or so for bladder infection symptoms. I took Cipro ending a week ago for ten days and already have burning again. Where the crap do I go from here? I just got back from the Urologist and am so frustrated. He gave me some medicine for overactive bladder syndrome but I can't help wondering if all the symptoms are linked.....It's not just that I "feel" like I need to go to the bathroom....stuff actually comes out

any advice would be sooo greatly appreciated. I am flummoxed. I definitely don't want to let all this go and have my symptoms worsen if I have MS. Do I got ahead with a spinal tap? Could I be within the 5% that have normal MRI's??

Thanks!

[flamingo22]

Thank you so much! It is so nice to know there are others out there. Some days I feel crazy and wonder if it all is just "in my head". I really appreciate all the support. I"m just trying to figure out what my next move is...

Flamingo

[steph74]

I know how you feel.  I'm 36 and have been dealing with symptoms since 2002, ater the birth of my second child as well.

My MS specialist says my neuro exam looks like MS, but my MRIs remain mysteriously clear.  I took a 5 year break from seeing neuros because it was stressing me out to be constantly hoping that they would figure out what's going on.  

I don't have any answers for you.  Just wanted to lend my sympathies, because I know how you feel.

Stephanie
undx

[starryeyes1]

Hi and welcome!!

It took 3 MRI'sover the course of a year for 1 lesion to show up. My neuro wouldn't diagnose me because there was only 1 lesion. It wasn't until I went out of state to an MS specialist that I got diagnosed. He read the old MRI's and found 3 other small lesions that a radiologist and neurologist missed. You might have something that hasn't been seen yet. My MS doc said diagnosing me wasn't just the films, it was my symptoms and age. They look at everything.

The LP was a final test to confirm his suspicions. I can't say that I am glad to have MS, but I am glad to have an answer and to be vindicated from the past neuro's who thought it was all "in my head"..Well, part of that is true.

Good luck in getting answers.
Take Care

Kristi

[Lulu54]

Hi Flamingo and welcome to our little corner of the web.  This is a very savvy group of MS consumers and they will be happy to help you out with your questions.

First let me say there's nothing to be embarassed about - we all have hair on our big toes!  LOL

Your symptoms sound a bit like mine - it was that same "can't feel the razor" problem that initially popped up for me.  And yes, I do have peripheral neuropathy in my one leg - particularly at the feet and toes.  The EMG gave mixed answers and that sent me for the MRI and the eventual dx of MS.

And then the bladder went haywire.  We have lots of bladder info in our health pages, so I won't repeat it here.  I did start meds about 6 weeks ago for my bladder, and I am soooooooo happy  with the results.  What a difference it has made.  A neurogenic bladder can be treated so you might try the drugs and see if you have luck with them.



Fortunately I have skipped the back problem so far.  

Yes, hyou could be in that 5% but you could also be one of those people who don't reveal their lesions yet.  They could be hiding in the deep recesses  ......

As for the spinal tap, what does your neuro recommend?  Its not as bad as the name sounds.

welcome again - I hope to see you around.

be well,
Lulu