Legs, legs legs.. and scar tissue!!! Help me understand please!

[Guest guest]

Hi Everyone,

To update you I finished my nursing assistant program, and got a FREE ride to an

EMT program (no lifting!).

The crazy feet burning- I somehow got used to it. Still happens, no explanation.

Now a new symptom around 3 weeks ago, when I bend my left (weaker) knee for 1-2

min and stretch it I start having crazy spasms in the knee only. NO matter time

of day, activity etc.

The rest of neuropathy/ feet burning continues as usual..

I saw my GP who says there is nothing physically wrong with the ligaments, bones

etc. She thinks this is spine related.

My last MRI showed scar tissue (pretty intense) but no surgical intervention.

I just don;t understand- what is this? Is this possibly caused by scar tissue

STILL growing after 18 months??What can I do? Workout legs etc??

I had a mini breakdown today.. all of a sudden I have knots, legs killing me,, I

can't figure it out!!!

Thanks for any help!

[Guest guest]

, I'm going to look this up.. I did go to therapy for a long time and have

had multiple injections for knots- trigger point.. I will check this out.

Thank you

Subject: Re: Legs, legs legs.. and scar tissue!!! Help me understand

please!

To: " Tethered Spinal Cord Yahoo Group " <tetheredspinalcord >

Date: Monday, April 16, 2012, 7:55 PM

Hi , 

Sounds like you have Neuropathy. Not too long ago I did treatment for this at a

rehab center. The patients who went there had it from other reasons and not

related to TSC like me. I received 8 sessions of Marcaine 0.25% injections. It

didn't go away due to the fact that it was related to radiculopathy, but it did

go from sharp numbness to more of a dullness, and a lot more manageable. Google

Neuropathy and you should find someone that treats that in your area. Most of

the doctors are Pediatrists.

Sent via BlackBerry by AT & T

Legs, legs legs.. and scar tissue!!! Help me understand please!

Hi Everyone,

To update you I finished my nursing assistant program, and got a FREE ride to an

EMT program (no lifting!).

The crazy feet burning- I somehow got used to it. Still happens, no explanation.

Now a new symptom around 3 weeks ago, when I bend my left (weaker) knee for 1-2

min and stretch it I start having crazy spasms in the knee only. NO matter time

of day, activity etc.

The rest of neuropathy/ feet burning continues as usual..

I saw my GP who says there is nothing physically wrong with the ligaments, bones

etc. She thinks this is spine related.

My last MRI showed scar tissue (pretty intense) but no surgical intervention.

I just don;t understand- what is this? Is this possibly caused by scar tissue

STILL growing after 18 months??What can I do? Workout legs etc??

I had a mini breakdown today.. all of a sudden I have knots, legs killing me,, I

can't figure it out!!!

Thanks for any help!

[Guest guest]

Spasitcity is very common with SCI/D. It is neurological in origin. I don't

know if PT can help, but baclofen is the Rx most commonly used to treat

spasticity that is neuro in origin.

Yes, it is also quite common to retether from scar tissue, which can also

become a symptomatic tether.

I would find a physiatrist that is well versed in treating SCI/D and should

be able to help.

Jenn

> **

>

>

> Hi Everyone,

> To update you I finished my nursing assistant program, and got a FREE ride

> to an EMT program (no lifting!).

> The crazy feet burning- I somehow got used to it. Still happens, no

> explanation.

> Now a new symptom around 3 weeks ago, when I bend my left (weaker) knee

> for 1-2 min and stretch it I start having crazy spasms in the knee only. NO

> matter time of day, activity etc.

> The rest of neuropathy/ feet burning continues as usual..

> I saw my GP who says there is nothing physically wrong with the ligaments,

> bones etc. She thinks this is spine related.

> My last MRI showed scar tissue (pretty intense) but no surgical

> intervention.

> I just don;t understand- what is this? Is this possibly caused by scar

> tissue STILL growing after 18 months??What can I do? Workout legs etc??

> I had a mini breakdown today.. all of a sudden I have knots, legs killing

> me,, I can't figure it out!!!

> Thanks for any help!

>

>

>

>

[Guest guest]

Thanks Jenn.I was on Baclofen since 2010.. but nothing.. so I have gone the

round will ALL muscle relaxers. I'm on Scelaxin?? Does nothing but make me

tired.

I'm hearing " go to neurologist " ..

I'm just confused why after almost 2 years is something popping up??

> **

>

>

> Hi Everyone,

> To update you I finished my nursing assistant program, and got a FREE ride

> to an EMT program (no lifting!).

> The crazy feet burning- I somehow got used to it. Still happens, no

> explanation.

> Now a new symptom around 3 weeks ago, when I bend my left (weaker) knee

> for 1-2 min and stretch it I start having crazy spasms in the knee only. NO

> matter time of day, activity etc.

> The rest of neuropathy/ feet burning continues as usual..

> I saw my GP who says there is nothing physically wrong with the ligaments,

> bones etc. She thinks this is spine related.

> My last MRI showed scar tissue (pretty intense) but no surgical

> intervention.

> I just don;t understand- what is this? Is this possibly caused by scar

> tissue STILL growing after 18 months??What can I do? Workout legs etc??

> I had a mini breakdown today.. all of a sudden I have knots, legs killing

> me,, I can't figure it out!!!

> Thanks for any help!

>

>

>

>

[Guest guest]

,

Who knows why you're having new/different problems now. TC never really has

a simple solution. If there is any tension on the nerves from any scar

tissue or a retether to scar tissue from surgery, that could be a possible

cause. Like the original tether, it becomes symptomatic over time with the

stress put on the nerves/cord. Maybe now the stress has just been enough to

start causing problems. Sometimes an MRI or myelogram can help provide

answers, other times, just no way to know w/o exploratory surgery - in

which case treating the symptoms is much easier and less invasive.

How much baclofen did you take? I know some people who take quite a bit of

the stuff. My next door neighbor can take a whole bottle of the stuff and

it doesn't begin to touch his spasms. He had to have a intrathecal baclofen

pump placed for it to work. I have taken all kinds of muscle relaxers and

baclofen is the only one that works on the spasticity caused by TC (I have

taken valium and soma and flexeril and skelaxin before my TC for muscle

spasms related to muscle issues and they worked fine, but they don't begin

to touch the spasticity from my TC). Recently, my MD tried to change me

over to flexeril because it is a pregnancy category B, rather than C like

Baclofen. After one dose of flexeril and one missed baclofen it was awful.

If I don't take my 20mg baclofen BID I'm miserable. Before I was pregnant,

I took 20mg 2-4x/day. Now that I'm pregnant, I go out of my way to only

take 2 a day, which works fine as long as I take it easy (which is super

easy to do since week 8. I don't think my body likes me being pregnant.

Its week 18 and I'm still fatigued and nauseous).

Wish I had a better answer. I would go see a physiatrist that specializes

in SCI/D. They would be best versed to treat spasticity that is

neurological in origin, IMHO.

Good luck!

Jenn

On Thu, Apr 26, 2012 at 8:30 PM, Dybowski wrote:

> **

>

>

> Thanks Jenn.I was on Baclofen since 2010.. but nothing.. so I have gone

> the round will ALL muscle relaxers. I'm on Scelaxin?? Does nothing but make

> me tired.

> I'm hearing " go to neurologist " ..

> I'm just confused why after almost 2 years is something popping up??

>

>

>

>

>

> > **

>

> >

> >

> > Hi Everyone,

> > To update you I finished my nursing assistant program, and got a FREE

> ride

> > to an EMT program (no lifting!).

> > The crazy feet burning- I somehow got used to it. Still happens, no

> > explanation.

> > Now a new symptom around 3 weeks ago, when I bend my left (weaker) knee

> > for 1-2 min and stretch it I start having crazy spasms in the knee only.

> NO

> > matter time of day, activity etc.

> > The rest of neuropathy/ feet burning continues as usual..

> > I saw my GP who says there is nothing physically wrong with the

> ligaments,

> > bones etc. She thinks this is spine related.

> > My last MRI showed scar tissue (pretty intense) but no surgical

> > intervention.

> > I just don;t understand- what is this? Is this possibly caused by scar

> > tissue STILL growing after 18 months??What can I do? Workout legs etc??

> > I had a mini breakdown today.. all of a sudden I have knots, legs killing

> > me,, I can't figure it out!!!

> > Thanks for any help!

> >

> >

> >

> >