Re: Any problems with walking?

[Guest guest]

I was wondering if any of you have had any problems with walking.

My mom thought that her sciatic nerve was acting up, but somehow this

seems different. We've known that she has had sarc in her spine for

over a year, but we never thought about it effecting her walking.

The walking issue is one that many of us face- sometimes off and on- sometimes it becomes a paralysis. A Chiropractor might be able to help her if it is sciatic************************************** See what's free at http://www.aol.com.

[Guest guest]

I have trouble with walking. They have only found the sarc in my brain & my spine. I am ok around the house because I either furniture surf or wall surf. I was using a cane until about 5 months ago or so. Now I use a walker. I am on Cytoxan and my doc says they want to keep me on it so I will be able to continue walking. I stagger alot and my balance is terrible. I also have hydrocephalus and have had a shunt installed to drain the excess fluid. My shunt failed last year after 9 years and I had a new one put in. I have a fair amount of back pain but I only need Tylenol. I have more numbness than actual pain. Do they have your mother on any type of medication?grannylunatic@...

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.

[Guest guest]

HiMost of my symtoms manifest in my walking. I have a very spastic gait and I have to touch something to know where my legs are. Recently my right leg just isn't there when I go to step. I use a walker in the house. My legs also get very tired. It is like I am walking in mud. I have sarcoid in my spinal cord.After every flare up, I lose more ability.I know everyone is different so I hope this helps.Take care Dugger wrote: Hi, I was

wondering if any of you have had any problems with walking. My mom thought that her sciatic nerve was acting up, but somehow this seems different. We've known that she has had sarc in her spine for over a year, but we never thought about it effecting her walking. She can hardly move through her home and has to have some type of assistance to walk at all. She's been experiencing a flare up for several weeks, but when I mention the issue with the walking to her hospice nurses they don't seem to see a connection. Does anyone here? Just looking for some answers. Thanks!

[Guest guest]

Is it pain, balance, ability to move her legs? What is causing the

most difficulty? I have balance problems because the balance mechanism

has been damaged. I have pain in my feet from nerve demyelenation, and

swelling in the ankles from tendon inflammation - all from sarc. My

Remicade has helped with a lot of this. Prednisone has also helped

alot for short-term relief of serious flares. I use tylenol 3 for pain

sometimes.

[Guest guest]

Walking, stumbling, whatever you call it, its a problem!

I have a spastic gait whenever I am at the tail end of my last

solumedrol infusion which gets better for 3-4 days until it is almost

time for the next infusion. The neuro says it is caused by the sarc

in the central nervous system but Im not so sure, between swollen and

very tender ankles, neuropathy i my feet, dizziness from whatever form

of sarc causes that, Im convinced there is no way Ill ever walk normal

no matter what they do. So, I am now on a cane most of the time and

finding that it is causing difficulties of its own with my right arm

as it gets so sore from using the cane that I have to wrap it in hot

wet towels for an haour or so before bed every night, (now hows that

for sexy, imagine your man with wet towels wrapped around his arm,

heating pads on his knees and ankles, cold pak on his head for the

headaches and a pile of pill bottles sitting next to him, and you can

imagine how exciting my wifes life really at this

point!!!!!!!!!!!!!)(then of course we have to ask who is REALLY

suffering fromt his disease, me or her????)

Oh well, my being a real hottie these days aside, from talks with my

neuro it appears gait if often affected with neuro sarc, and he wasnt

the least bit surprised to see mine change so dramatically.

I was though damnit!

>

> Is it pain, balance, ability to move her legs? What is causing the

> most difficulty? I have balance problems because the balance mechanism

> has been damaged. I have pain in my feet from nerve demyelenation, and

> swelling in the ankles from tendon inflammation - all from sarc. My

> Remicade has helped with a lot of this. Prednisone has also helped

> alot for short-term relief of serious flares. I use tylenol 3 for pain

> sometimes.

>

[Guest guest]

Sorry Stu to hear of all this. Yes, I've been there! I was on crutches

for a long time. Used canes too. Lots of pain. Ended up with forearm

crutches. They took the pressure off my hands and were more stable. I

am happy to say that, at the moment Remicade eased those problems and

I can walk without too much trouble but I was almost crippled on and

off for nearly 2 years. Now my problem has switched to my throat

(paralyzed right vocal cord and facial muscles). Never a dull moment!

This disease sure causes one to become a constant problem solver.

At any rate, look into renting some forearm crutches and see if they help.

[Guest guest]

>

> In a message dated 7/2/07 12:00:53 PM Pacific Daylight Time,

> shightower@... writes:

>

>

> > hows that

> > for sexy, imagine your man with wet towels wrapped around his arm,

> > heating pads on his knees and ankles, cold pak on his head for the

Im thinking about buying one of those Basil Rathbone smoking jackets

sos Ill look really hot with the wet towels drapped over my head!!

On a slightly more serious note, is it common to have a progressive

weakness in your lower legs? This is somehting that started a long

time ago, but of late is starting to get a bit more serious. When i

stand my legs shake violently, the same when I go up or down a step,

not sure if its the sarc or something elses raising its ugly head?

> > headaches and a pile of pill bottles sitting next to him, and you can

> > imagine how exciting my wifes life really at this

> > point!!!!!!!!!!!!!)(then of course we have to ask who is REALLY

> > suffering fromt his disease, me or her????)

> >

>

> Add the cpap mask, the oxygen concentrator billowing it's low slow,

rhythm

> and you've got the picture at my house! It is a bugger--- and so

the world

> turns-- can we get off! (I know, I know, not likely dressed like

this!)

>

> tracie

>

>

> **************************************

> See what's free at

> http://www.aol.com.

>

[Guest guest]

Stu, many of us have something called peripheral neuropathy as part of

our disease.

The following link will give you some good information about this.

Perhaps this is what you are suffering from as part of sarcoidosis.

http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131

[Guest guest]

> >

> > In a message dated 7/2/07 12:00:53 PM Pacific Daylight Time,

> > shightower@ writes:

> >

> >

> > > hows that

> > > for sexy, imagine your man with wet towels wrapped around his arm,

> > > heating pads on his knees and ankles, cold pak on his head for the

>

> Im thinking about buying one of those Basil Rathbone smoking jackets

> sos Ill look really hot with the wet towels drapped over my head!!

>

> On a slightly more serious note, is it common to have a progressive

> weakness in your lower legs? This is somehting that started a long

> time ago, but of late is starting to get a bit more serious. When i

> stand my legs shake violently, the same when I go up or down a step,

> not sure if its the sarc or something elses raising its ugly head?

>

> > > headaches and a pile of pill bottles sitting next to him, and

you can

> > > imagine how exciting my wifes life really at this

> > > point!!!!!!!!!!!!!)(then of course we have to ask who is REALLY

> > > suffering fromt his disease, me or her????)

> > >

> >

> > Add the cpap mask, the oxygen concentrator billowing it's low slow,

> rhythm

> > and you've got the picture at my house! It is a bugger--- and so

> the world

> > turns-- can we get off! (I know, I know, not likely dressed like

> this!)

> >

> > tracie

> >

> >

> > **************************************

> > See what's free at

> > http://www.aol. http://www.aol.com.> com.

> >

>

[Guest guest]

Hey Tracie<

Yup, they have teested me from stem to stern for MS and nothing. The

leg weakness is pretty new at least as severe as it is now, before it

was mostly a passing f3eeling of weakness but lately whenever I stand

up both legs tremble, visabily for a moment or two until they have

neough poop to stand my ponderous weight. The Rheumy saw this happen

the other day in her office and asked if I was haveing leg

weakness.........................................well DUH! To this

she replied in her oh so formal and noninformative way, UM HM, and

left the room.

So what can you tell me about progressive Sardoidosis, what little Ive

found says it means non responosive to steriods, but mine does respond

to the steriods, to an amazing degree. Menaing, by the day of the

week that I get my infusion I am almost unable to function from the

severe tremors that wrack my body from head to toe, but within several

hours of the infusion they begin to subside and by the next day are

mostly gone until the next week. So if my information is correct

about progressive Sarcoidosis this doesnt fit,,,,,,,,right???????

Say right,,,,,pretty please, I could really use some good nwes about

now.........

>

> Leg weakness is a sign of progressive sarcoidosis. Rarely does it

end up in

> paralysis-- but it does happen.

> Have they done a spinal tap on you to make sure this is not MS?

> I would definately bring htis up to your MD so that he can make sure

that you

> don't have any other auto-immune thing going on.

>

> Take care,

> Tracie

>

>

> **************************************

> See what's free at

> http://www.aol.com.

>

[Guest guest]

>Hi

My name is kathy and yes there can be problems with walking for SARC patients. I

have

had SARC for five years and have been unable to walk for three. Sarc is such a

rare disease

that I am not surprised that you have trouble getting info. your MOM may also

experience

some intence joint pain, my doctor believes this is caused by nerve damage.

check with

her neurologist or rummitologist.

Kathy

> Hi, I was wondering if any of you have had any problems with walking.

> My mom thought that her sciatic nerve was acting up, but somehow this

> seems different. We've known that she has had sarc in her spine for

> over a year, but we never thought about it effecting her walking.

>

> She can hardly move through her home and has to have some type of

> assistance to walk at all. She's been experiencing a flare up for

> several weeks, but when I mention the issue with the walking to her

> hospice nurses they don't seem to see a connection.

>

> Does anyone here? Just looking for some answers. Thanks!

>