Re: Off Subject ~Hot Baths~

[Guest guest]

Hi.I am new to this group and i just read your message.I too suffer

from the can't walk?thing.what you describe is a mirror of my level

of PP/MS.hot weather and showers and now cold weather tremors are

more and more intrusive.I hope i cnvinced my GP about LDN and

hopefully when i see him on monday he will prescribe it for me.

>

> >My old GP asked me regularly if hot baths made

> >me limp. They didn't until some time after my

> >diagnosis. Maybe that effect came later for me

> >than for some, or maybe my diagnosis came earlier?

>

> The same thing happened to me, Russ. I am RRMS; I had my first

> symptoms (numbness) about 25 years ago; subsequent symptoms (more

> numbness) were mild and far apart. This year, however, I

developed

> L'hermittes and partial deafness; and suddenly I can't take hot

> baths anymore.

>

> Up till this year, I NEVER had a problem with hot baths.

> Loved 'em. The hotter the better. I also loved hot weather. But

> now I can't get anywhere near a hot bath, and any weather above

80,

> I've got the AC on.

>

> I wonder what this means. Russ, was there any change in your

> symptoms that corresponded time-wise with the inability to take a

> hot bath? Just wondering...

>

> -- Maureen

> Maureen, and others who might wonder. I had long had some numbness

> too. Just didn't pay attention to it. Hot baths and hot tubs

become

> less of a problem to ponder once other symptoms of MS begin to

> manifest. For me, I could still walk when I noticed that I was a

limp

> noodle when I tried to get out of the hot water. Only, a little

limp.

> No pun intended.

>

> A little later, the limp became more severe, my foot dragged, and

> showers were less of a problem than baths. I am pasting in below

from

> a personal reply to Caren who asked me the following questions.

> Maybe, some of you would care add~to or could answer her better

than

> I have?

>

> " Tell me- what happens when people say they can't walk? "

>

> Well, people look at them kinda in disbelief. Everybody can walk,

> can't they? If you're sitting down in a normal chair, you still

look

> pretty normal. LOL If they only knew... The chair is a good prop,

> heh? ...hehe...

>

> Actually, the fact is that most people would rather not see me try

to

> walk. When I met my caregiver, Joy, I used only a cane thinking I

was

> less disabled that way. I also used restaurant tables, walls,

other

> people's chairs, and anything else I could grasp to stabilize

myself.

> Pride is a dangerous thing.

>

> " Is it weakness or stiffness? "

> Yes! Probably, both!!

> When I first get up in the mornings, my legs don't want to work at

> all. The pain and stiffness is mostly in my lower back, which I

> originally thought was a pulled muscle or some kind of injury. As

my

> day progresses, the discomfort diminishes but the legs still are

very

> much unable to do what I tell them. For me, my right leg is the

most

> uncooperative. Since I can't raise my toes up, or lift my foot by

> bending my knee, walking is a real struggle. Joy got my Dr to

> prescribe a leg brace which really helps by keeping my foot in an

L

> position so I can swing my whole leg forward from the hip.

Otherwise,

> the foot drops and comes to rest dragging backwards. Not a good

way

> to try to walk.

>

> By using a 4-wheeled walker, I can get around okay for short

> distances, in the house etc. It has a seat for when I stop and

> bicycle type hand brakes, which I grip with each step. I keep

> breaking the cables.

>

> When I go any distance, a wheelchair is less hassle for everyone,

and

> at least ten times faster. Now that I've got a motorized scooter,

I

> use it for anyplace close by or walking the dog.

>

> " I know I have only scratched the surface with my knowledge with

it

> all...Are you walking now? "

> No, I'm sitting down! hehe I never was good at using the computer

on

> the move. LOL I hope this answers a couple of your questions and

that

> you never have to gain your knowledge of MS~can't walk first~hand.

>

> I neglected to answer, perhaps, one of the most troubling aspects

of

> the what happens when you " can't walk " question. You don't make it

to

> the restroom in time! The problem takes on new meaning~if you

fall.

> Russ

[Guest guest]

Good Luck I am at day 37 on LDN it is working. I hope it will help you too JL

-----Original Message-----From: neil_bednarick [mailto:neil_bednarick@...]Sent: Saturday, November 27, 2004 10:07 AMlow dose naltrexone Subject: [low dose naltrexone] Re: Off Subject ~Hot Baths~Hi.I am new to this group and i just read your message.I too suffer from the can't walk?thing.what you describe is a mirror of my level of PP/MS.hot weather and showers and now cold weather tremors are more and more intrusive.I hope i cnvinced my GP about LDN and hopefully when i see him on monday he will prescribe it for me.> > >My old GP asked me regularly if hot baths made > >me limp. They didn't until some time after my > >diagnosis. Maybe that effect came later for me > >than for some, or maybe my diagnosis came earlier?> > The same thing happened to me, Russ. I am RRMS; I had my first > symptoms (numbness) about 25 years ago; subsequent symptoms (more > numbness) were mild and far apart. This year, however, I developed > L'hermittes and partial deafness; and suddenly I can't take hot > baths anymore. > > Up till this year, I NEVER had a problem with hot baths. > Loved 'em. The hotter the better. I also loved hot weather. But > now I can't get anywhere near a hot bath, and any weather above 80, > I've got the AC on. > > I wonder what this means. Russ, was there any change in your > symptoms that corresponded time-wise with the inability to take a > hot bath? Just wondering... > > -- Maureen> Maureen, and others who might wonder. I had long had some numbness > too. Just didn't pay attention to it. Hot baths and hot tubs become > less of a problem to ponder once other symptoms of MS begin to > manifest. For me, I could still walk when I noticed that I was a limp > noodle when I tried to get out of the hot water. Only, a little limp. > No pun intended.> > A little later, the limp became more severe, my foot dragged, and > showers were less of a problem than baths. I am pasting in below from > a personal reply to Caren who asked me the following questions. > Maybe, some of you would care add~to or could answer her better than > I have?> > "Tell me- what happens when people say they can't walk?" > > Well, people look at them kinda in disbelief. Everybody can walk, > can't they? If you're sitting down in a normal chair, you still look > pretty normal. LOL If they only knew... The chair is a good prop, > heh? ...hehe...> > Actually, the fact is that most people would rather not see me try to > walk. When I met my caregiver, Joy, I used only a cane thinking I was > less disabled that way. I also used restaurant tables, walls, other > people's chairs, and anything else I could grasp to stabilize myself. > Pride is a dangerous thing. > > "Is it weakness or stiffness?"> Yes! Probably, both!!> When I first get up in the mornings, my legs don't want to work at > all. The pain and stiffness is mostly in my lower back, which I > originally thought was a pulled muscle or some kind of injury. As my > day progresses, the discomfort diminishes but the legs still are very > much unable to do what I tell them. For me, my right leg is the most > uncooperative. Since I can't raise my toes up, or lift my foot by > bending my knee, walking is a real struggle. Joy got my Dr to > prescribe a leg brace which really helps by keeping my foot in an L > position so I can swing my whole leg forward from the hip. Otherwise, > the foot drops and comes to rest dragging backwards. Not a good way > to try to walk.> > By using a 4-wheeled walker, I can get around okay for short > distances, in the house etc. It has a seat for when I stop and > bicycle type hand brakes, which I grip with each step. I keep > breaking the cables. > > When I go any distance, a wheelchair is less hassle for everyone, and > at least ten times faster. Now that I've got a motorized scooter, I > use it for anyplace close by or walking the dog.> > "I know I have only scratched the surface with my knowledge with it > all...Are you walking now?"> No, I'm sitting down! hehe I never was good at using the computer on > the move. LOL I hope this answers a couple of your questions and that > you never have to gain your knowledge of MS~can't walk first~hand.> > I neglected to answer, perhaps, one of the most troubling aspects of > the what happens when you "can't walk" question. You don't make it to > the restroom in time! The problem takes on new meaning~if you fall.> Russ

[Guest guest]

-- [low dose naltrexone] Off Subject ~Hot Baths~

>My old GP asked me regularly if hot baths made

>me limp. They didn't until some time after my

>diagnosis. Maybe that effect came later for me

>than for some, or maybe my diagnosis came earlier?

Russ,

Reading your posting was like hearing someone tell my own story.I'm sure many of the others related to your stoty about "walking" as well.The whole story was eerily familiar(except that on me it's my left leg that doesn't listen to me)I'm still at the stage where I feel more normal if I use a cane, instead of a walker or wheelchair.I don't want to make that "leap" in my mind to "disability....this way I can trick myself into a mindset of a temporary walking problem.I'm more comfortable with that.

Sometimes I can "walk-run" with my cane to a bathroom pretty fast.My neuro gave me a scrip for a wheeled walker in july. The scrip still sits on my desk, unfilled.

I still want to find the magic bullet that will make this all go away as magically as it arrived.Call me unrealistic, but I'm a fighter, as so many of us are and I believe there is a cure out there, or many cures.

We have to be like the parents in "Lorenzo's Oil" and be our own advocates.We have the blessing of strength in numbersand each others wisdom.