LONG TIME MS PATIENT

[kkhanse1]

I was diagnosed with relapsing-remitting RRMS when I was 18 years old, 35 years ago, with symptoms occuring every 5-10 years.  Symptoms from numbness to tingling lasting for two weeks, always right sided.  Growing up in CA, and living in KS, MO, and TX as an adult, I've been very physically active and a runner, completing two marathons.  I started taking AVONEX almost 4 years ago. 4 years ago, my right foot would become numb, with drop foot when running only a few miles.  I'd stop and rest and could continue on.  I went to a orthopedist, who told me I had a bunion.  I had bunionectomy, and now can't feel my right big and next toes.  And, I can't walk more than 1/2 mile wthout stumbling from drop foot.  My doctor here tells me that MS patient don't do well with surgery.  Just yesterday it was a beautiful day here in Salt Lake, so I walked to COSTCO and ended up stumbling back to work.  Now for my question:  I need to know if anyone has any of these similar symptoms and what medications you are taking?  Any advise or suggestions would be greatly appreciated.

[drsdonthelp]

I am a limbolander so I cannot say if my problems after having a surgery are related or not, however, after each and everyone of my 5 surgeries I have had since 2007, I have had what I call a "relapse".
  Slurred speech for 1 1/2 weeks after 1st surgery, nystagmus and lightheadedness/vertigo for 8 months after 2nd, slurred speech again for 2 weeks after 3rd surgery, then right before the last two surgeries my left hand started to have a tremor that was extreme, still happening to this day,
and by the 4th and 5th surgeries that were combined (orbital implants and sinuses) my nose has been numb for 6 months .

I take medication for seizure, thyroid disease, anxiety, vit. D, and spasticity.

Pam

[Guitar_grrrl]

Welcome!

I've had MS symptoms on and off since age 27, possibly earlier.  I've always been an active cyclist, whitewater kayaker & rafter, surfer, hiker...I was diagnosed at age 50.

I have mild foot drop with extended exertion, though my left foot goes numb with exertion as well.  I know I will be looking at these new AFOs or braces soon.

[Lulu54]

I am on ampyra and have good things to say about it - plus there are tons of off-label anecdotal uses being kicked around, including helping with cognitives issues  and heat sensitivity.  Be sure to ask your neurologist to try it.

As for the foot drop, it really is common, especially when our muscles get fatigued/overheated.  You may have to learn to pace yourself because we almost always can recover from this.  It may take a few minutes or perhaps hours, but it does go away.  The secret is to stop your activity just before you hit this fatigued point.  I know, that is easier said than done.

Welcome to the forum - I hope we will see you around often.
Lulu

[Sumanadevii]

I think (not a medical professional or anything) that a leg brace might just work.  Today they are lightweight...not like the ones of the past.

Just my two cents.

[grannyhotwheels]

I have drop foot with both of my feet... I wear braces for it... In the ankle part of the brace it is spring loaded so that every time I take a step is springs my foot back up... Back when I could walk a lot this was the greatest thing in the world... They wouldn't let my feet drop... I"v also heard really good things about the Ampyra and at 1 point I wanted to try it... Because I've deteriorated so much I'm not sure I'm a good candidate for it any more... I wish you the best and keep us posted...

I'll be praying,
Carol

[HVAC]

Welcome.

I have had MS for 46 years and done fine with many surgeries. It just depends on the person and you just won't know until you have it.

There are braces that can help with foot drop and devices which give electric stimulation. They are trial and error again no one can tell what works for which person. There is also Ampyra a drug that helps with some people's walking.

Alex