Quick update - looking for thoughts

[hc1]

Hi everyone.  I just thought I would stop by as it's been a couple of months.  A short overview -I'm a limbolander with  MS symptoms on and off for >10 years.  Several neuro visits, MRI's, EP's; tons of blood work, EMG, NCV.... no conclusions.

I had a TDAP in June 2014 and 2 weeks later had Transverse Myelitis like symptoms.  My neuro said "yeah, maybe it was slight TM".  Pain and numbness in legs, feet, back, hard to walk, extreme fatigue.  This lasted a couple months but improved for the most part.  I still have days I don't "feel" like I have a left foot.  I have never felt "great" since then.

In early October 2014 I woke up with strange inability to swallow correctly.  The back of my tongue wasn't working right with my soft palate.  I was having water and food go up my nose.  I had a swallowing study, Speech pathologist appts, lab work again, neuro visit.  All normal with maybe slight palate weakness.  

Over the last (almost) 5 months this swallowing thing has waxed and waned, but never gotten better.  Some days I can eat and drink water in small sips.  Others I can barely get anything to go down and not up.  I can no longer just "chug" any liquid.  I was very worried about ALS, but my neuro says no way.  I even pressed for a tongue EMG which he said was "quiet".  I am due for my next MRI and my neuro says "yep it's time for an LP".  

At first I thought this was anxiety related but I have been doing well with that lately, going to a therapist and all, and it's not gotten better.   I am also unable to find anyone with exactly my issue to say, well, maybe it is MS causing this.  Sigh.   Any thoughts are appreciated!  Thanks all as usual!

[Jmjones108]

I have been having burning/tingling leg pain after a tetanus shoot. With leg weakness.  It has been 2 months for me did you get better from the Vaccine?

[hc1]

Thanks Kyle!

[kwarendorf]

HI - LP's/O--Bands are helpful, but not definitive when it comes to diagnosing MS. By itself a poaitive o-band result indicates that there is inflammaiton in the central nervous system. It doesn't provide any info on the cause of the inflammation.

As to the LP itself, Try not to believe everything you read. In fact, I'd stop reading :-) I've had several and never had a problem of any kind.

Kyle

[hc1]

Thanks Jen!  I am going to wait to see what my MRI shows first then decide on the LP.  If my MRI changes, I won't need it.

[jenphilly]

MS is so person specific.... probably not 2 of us here who have same presentation.... but I do have quite a bit in common with your description.

The lp was my final definitive test... it doesn't always rule out, a normal LP does not mean no MS, but a positive for o - bands and protein markers is a definitive yes.

I was terrified to do the lp. Just ask for fluoroscopy that literally shows the doctor where he is placing the needle. I had nasty headache and some pain for day after, but it did provide the answer.

I hope if you decide to go with the LP, it goes smoothly and gives you resolution so you know what path you need to take to proactively move forward with your life!!

Hugs,

Jen