My legs are dying!

Hey there, it's been awhile since I lasted posted a question on here. I still roam the pages but I'm lacking energy to respond.

I need your help in coming up with the right words to describe my leg sensations to a doctor.

I'll try and explain it to you....

It feels like the nerves are grinding/moving/twitching. I explained it to one doc that it's like trying to tune into a radio station and you have to keep turning the dial...the signals are stuck or misfiring.

These sensations happen all day long, in both legs. I occasionally get it in other areas too arms, neck and sometime in my abdomen/hip area.

It feels like my legs are dying, they seem to be getting weaker and every day I am grateful when I get out of bed and the hold me up.

I'm still undiagnosed after 2+ years of major symptoms. I'm fed up with doctors (except for my primary doc).

I'm currently taking Gabapentin, Nuvigil, and Zanaflex. My achilles have been getting shorter and legs are stiffer and more toned then they've been in a loooooong time.

Thanks so much for any and all responses. I hope all of you are doing well. Looking forward to meeting some of the new people on here.

-Kelly
(limbolander....still)

[jujuminx]

Hey Kelly,

I think you are describing the sensations just fine.  MS is different for everyone but I can somewhat relate to how you described your leg sensations.

MS can cause so many odd sensations...tingling, heavy, water running down your limbs, walking on rocks, electical shocks, twitching, bug biting, vibrating, squeezing, etc.  All your dr really needs to know is how it feels for you.  I wouldn't worry about what adj's you use to paint the picture for him.

So I am supposing your dr has run all the normal tests and they have come up negative?  Does he have any ideas at to what it is you do have if he doesn't think MS?  

I am looking forward to hearing more about you and your journey.

Julie

[MonkeyMom4]

Hey Julie,

Thanks for your response. Yep, I've done 2 years of testing, mostly everything is normal. (but my body is NOT normal)

My PCP does believe it's MS, my neuro hasn't ruled it out but said he's not sure what IT is.  Ah...doctors.

My PCP is excellent as has been a huge help. He is ready to send me to where ever I'd like to go for further testing.

I told him that at this point I'm not ready, I'm too exhausted. Exhausted with all the appts, trying to explain myself and tired of hearing, hey the lab/mri's/vng/sleep studies/cardio exams...etc are 'NORMAL'!!!

I told my PCP that at this time I'm just want to treat the symptoms and maybe someday an answer will appear.

The past week I've come closer to taking that next step of a second opinion, the problems with my legs are scaring me more and more.

Thanks again for answering.

Hope you're well.

-Kelly

[jujuminx]

Arrrrrgh!!! What a bummer. I waited a long time for my dx but my symptoms only lasted about 8 weeks at a time and then went away completely so it was easy to not follow up.

It wasn't until my last attack last year that was soooo bad that I decided not knowing anymore wasn't accepable for me. I was lucky though since my spinal  MRI showed lesions.

Limb issues are hugely scary. When you can't brush your teeth or walk where you want to walk, it keeps you up at night worrying about what's next.

I encourage you to take that next step.  I know it's scary, really I do. You body seems to be betraying you and you feel trapped.

Sometimes just getting some to look at your current test results can help. A fresh perspective.  

Hang in there and keep us posted.

Julie

[Guitar_grrrl]

Hey, Kelly,

I'm sorry you STILL have no diagnosis - that's crazy!  Your symptoms sound very similar to mine, and it sounds like spasticity.  I think it's imperative you try to stretch your muscles.

Sit on the floor, use a strap or belt to put around your feet if you cant reach them with your hands, and stretch your hamstrings.  

Squat on your feet or toes to stretch your calves (feels great on the back, too!) and achilles tendons.  

Lie prone (face down) on the floor, bend your knees and grab your ankles with your hands or the belt, and pull your ankles toward your buttocks to stretch your quads.

I could go on and on, but DO stretch!

Cheers,
Lisa

[berenick7]

I have the same feeling in my legs first for close to 2 weeks without pain just that feeling also I was able to move my legs normal so normal that no one believed what my feeling was then the feeling went away slowly until there was not that feeling for a day then 2 days ago I woke up and there we go again that nut this. time stronger then las time and my whole 2 legs up to abdomen area the first time was just up to the knee and the left leg feeling was stronger and right side was like 50%less went to the doctor and said might be a pinch nerve and to give another 2more weeks at this point I'm very scared