spinal lesions

[jerseyg]

I have had progressive weakness on the left. Can't feel needle sticks on the left. Most recent I am having the feeling of not knowing where I am in familiar surroundings.  Havetrouble with bladder and bowel. My question as I know. Everyone is different do I need to worry about mobility sooner than later?

[jerseyg]

I believe. I said that was my philosophy not that is was gonna fix me. As a matter of fact I have noticed I am having more spasms and dragging my leg more. As a healthcare professional I am very aware of this process andhow unpredictable its course can be. I did not mean to offend anyone. I have been to the place of not walking and progressing to walker cane and now occasional tripod so I am with u. I am just a optimist not a realist by nature.

Missy

[supermum_ms]

Here I go again sort of disagreeing and I truely dont mean to be sitting on the highwire alone but I will always believe in the "use it or loose it" concept. NOT for a minute meaning you can keep your self out of the wheelchair because that would be misdirected and understandably hurtful. Anyone who even implies you could if you only tried harder, truely doesnt get it or understand where that commonly used sound bite really comes from.

I believe in brain plasticity, I have always believed our "brains" can rewire but with the repeditive damage seen in MS I think there needs a lot of focused repetitive OT to help it rewire and sometimes the damage is too great and it simply cant anymore, that is where the concept of use it or loose it fits. Up until the age of 12 our developing brains are laying down billions of pathways, from 12 onwards the cull begins. If its not being used we loose it, our brains naturally do this culling.

Now the spinal collumn doesn't really have anywhere else to go, so once its faulty its done, the game is different and there is nothing you could of done to change that, so the "use it or loose it" doesn't really work the same, there are posibilities with the brain that the spine doesnt give. Where it does apply is muscle mass, tendon flexability and muscle strength, if you dont work your leg muscles very much you will inevitebly become weaker, which is true for anyone so it does translate to use it or loose it on that level.

That does not imply if you lost it you didn't work hard enough to keep it or translate to work hard and you wont face disability down the road, that would be judgemental, emotive based and that has nothing what so ever to do with the concept of "use it or loose it".

Personally I have gone on the war path many a time with educators incorrectly using this concept in regards to a childs disability, they ARE implying lazyness and to me that shows their ignorance of the disability and it is an illfounded judgement/assumption call that has no barring of the concept.

Food for thought............JJ  

[Sumanadevii]

That saying "use it or lose it"?  It is not necessarily true with MS.  I know some wish it true but it isn't.  If you can use it, feel blessed.  No one worked harder to stay OUT of a wheelchair than me.  In fact, I continue to fight it.  MS takes what she wants when she wants.

Is exercise good for us?  Yep, the more the better.  But I hate other MSers who truly believe that saying.  Either they have a nice mild case or have never faced what is to be....To MSers that are already there, personally I find it hurtful.  I expect uneducated friends to not understand but another MSer?  They need to be educated.

[jerseyg]

You are so right in that statement. Better to help us if they do not have to look. Who would use those handicap spaces or all the mandated handicap accessories that all buildings are required to have. A lovely picture to paint but not one that is realistic. The ramps can be puchased for around 600-1000 but who has that just laying around. My scooter breaks down and fits in the trunk so it is easier to manage. Problem with that is I can not do that alone.I did see an eltric wheelchair the other day that is lighter and easier to manage may look into that for later. Right now I am staying put with the diet and exercise thing at least until my next appointment which is wednesday.

God has a plan and puts us where we need to be we just need to follow that plan and learn to be sensitive to that plan,.,.

[SarahL2491]

talking about these wonderful mobile devices that assist us, medicare still won't pay the the gadget to hook onto the back of your vehicle to transport these wonderful mobility aids.....I have my electric chair but can't take it anywhere, wish they would wake up...they obviously want us housebound

[jerseyg]

That would be great. I do ride and hoped to get to some this summer if my cooling vest comes in. I can see the mri and do know what I am looking at but will wait on the pros for a definitive diagnosis. I ha e also had a positive lumbar puncture. I think the neuro was concerned. Because of increasing CNS involvement.

[Sumanadevii]

Sorry Missy.  Your titled made it sound like you had spinal lesions with few on the brain.  It is true that with spinal lesions many lose mobility.  I would never have answered your post the way I did had I understood.

And by the way, a recumbent bike is wonderful for those of us that can walk little.  I can ride a long long distance.  The one I have right now is stationary.  I hope to get one that I can ride on the trails this Fall.

[jerseyg]

Thanks, I have 2 lesions on the brain. The spinal lesions are not confirmed yet. I have symptoms and got an "F" on my neuro exam. And as I am in a Masters program I am not talking about any exam I am taking there. I am following a diet. I walk. I even have been rock climbing. Mind you when I get to the top I can not walk to the Jeep. But I do make it to the top. I think the aggrivation is not being able to feel but that is okay when it comes to injections, and the muscle spasms.

Another thing that has really got me recently is the feeling of not knowing which way to go when I pull out of a parking lot. I have never had a problem with directions, everyone used to laugh and say they could drop me in the woods and I could find my way out and home. Now I cant find my way across the street.I told my husband that Illinois made the mississppi river run north and I wanted to know how they did it.

My philosophy has been to keep using it so I do not lose it. So I have been using weights and walking. Hope it works. Awaiting MRI results on lumbar and thoracic spine, I do have the CD and have already looked at it.

Missy

[jujuminx]

No one can predict the future.  Those of us with MS are forced to live in the present b/c of our disease.

Spinal lesions are typically more problematic than brain lesions BUT everyone is different.  All my lesions are in the spine and as far as the dr's are able to tell I have had MS for about 20 yrs now and I don't have any disability or even any symptoms at the moment.

While that is great news that is not a promise that my future will be disability free or sx free so I live my life as fully and as thoughtfully as I can now cause that is all I have. In reality it is all anybody has, MS or not.

Julie

[Sumanadevii]

Oh those spinal lesions.  They play games with us.  Today they might let us move around but tomorrow take it.  My neuro told me to get a mobile wheelchair last year.  I didn't do it.  Afterall most days I was able to get around on my scooter or walker.

Course, I was taking steroids monthly.  I have had to stop because of gastro issues with it.  It has been eight weeks.  My right foot, leg and hip are not moving.  It is like having just dead weight.  The mobile wheelchair is on order.  They measure  you and special build them.  I probably have another six weeks wait.  Now what?

I would say be prepared.  Don't mess around like I did.  I can not get anywhere right now.  If I am able to get on my scooter I am sitting sideways....I fear tipping over.  To use the wheelchair I need someone to push it....It's a mess.

Be like the Boy Scouts...Be prepared.

[HVAC]

Are you saying you know you have Spinal lesions?

The reality is it all depends on where a nerve becomes damaged. In MS there are two processes Inflammation with which symptoms come and go as inflammation comes and goes. Hence relapse and remitt. Then there is damage this can be either like an electrical short or it can be like a cut wire. Damage in the brain is better because there is more area for new path ways.

Most of the damage and inflammation in MS is not in the white matter which is seen on MRIs but in the gray matter which is not seen. There is some corrolation between lesions and symptoms but not always.

I have PPMS most of damage in PPMS is in the spine. I only have three brain lesions. I have had MS for 44 years. I have both bladder and bowel problems. The MS is in my brain, optic nerve, and spine. I walk several miles a day and ride horses.

The deal is it is all about when a nerve is cut. No doctor can predict where, when or, if that will happen.

I live my life one day at a time and do not worry about it. If it happens then I deal with it. My kind of MS usually does effect mobility and I kinda was waiting for the other shoe to drop. I realized I could not live that way. I realized I was the same person I was as the day before I first heard the word MS.

If you are talking about long range plans. I have figured out to alter my house if I have to in the future. How to have alternate transportation etc.

Otherwise I am going to do all I can and hope for the best. I started horseback riding last year. Trained a Service Dog a few years back and am now training her replacement when she retires.

I do not know if any of this helps answer your question.

Alex