Re: Losing the ability to walk.

[Guest guest]

Artie,

IV steroids always did it for me -it was definitely my favorite drug. I wish you the best of luck and hope you get to feeling like you should. What is you dx?

-- [low dose naltrexone] Losing the ability to walk.

Called Dr. Bihari's office today and spoke with a pleasant sounding and helpful man. Not sure who he was but he told the Dr. is recovering from a neck injury and is only doing telephone consults at $500.00 and hour. My reason for calling was to ask what he thought of my using iv solumedrol to quiet down an MS exacerbation. Asked him what else is it Dr. Bihari can offer me if I'm already taking LDN. He said probably not much but he did urge me to stay on the Naltrexone and said Bihari doesn't think much of steroids but added I have to do what I think is best for me. In the past, pre-LDN, steroids usually were like a miracle for me but over time they lost their positive effect. Long story short I called my neurologist tonight and have an appointment tomorrow for iv steroids. I am very down now and feel defeated. I so didn't want to go back for that but nothing is helping me. If I can't walk I can't work and if I can't work I can't survive. Not looking for sympathy, only telling it how I feel.ArtieLDN user since March 2005

[Guest guest]

Steroids usually depresses the immune

system while LDN is given to upregulate it.

So, ???

in Fayetteville

[Guest guest]

Artie, this is keith. I have been on LDN for 5 months now and don't see

any improvement. It seems like I'm going downhill. I also take copaxone

shots. My legs are getting weaker and dragging right leg. I have taken

supplements, etc, diets, even now I'n trying to get rid of yeast,

because someone here told me LDN DOESN'T WORK WELL WITH YEAST. I have

had ms for 17 years, the last 2 getting worse and worse. I was hoping

LDN WOULD STOP THE PROGRESSION. I don't think it is. Victor gave me some

names of drugs to get rid of yeast and I might try them. Like you said,

you would do anything to keep walking. Let me know if the steroids help

you again. Do you think the LDN has stopped your progression? good luck

and let me know what happens. thanks

keith

>

> Called Dr. Bihari's office today and spoke with a pleasant sounding

and

> helpful man. Not sure who he was but he told the Dr. is recovering

from

> a neck injury and is only doing telephone consults at $500.00 and

hour.

> My reason for calling was to ask what he thought of my using iv

> solumedrol to quiet down an MS exacerbation. Asked him what else is it

> Dr. Bihari can offer me if I'm already taking LDN. He said probably

not

> much but he did urge me to stay on the Naltrexone and said Bihari

> doesn't think much of steroids but added I have to do what I think is

> best for me. In the past, pre-LDN, steroids usually were like a

miracle

> for me but over time they lost their positive effect. Long story short

> I called my neurologist tonight and have an appointment tomorrow for

iv

> steroids. I am very down now and feel defeated. I so didn't want to go

> back for that but nothing is helping me. If I can't walk I can't work

> and if I can't work I can't survive. Not looking for sympathy, only

> telling it how I feel.

>

> Artie

> LDN user since March 2005

>

[Guest guest]

brother took steroids and ea time they worked for only couple weeks and then

it came back at him even harder every now and then doctors will give him

steroids when he is in hospital now we see no improvement from them at

all,no more steroids for him ever! he will start ldn tonight.he lost his

walking ability a long time ago

nancy from palmetto,ga

>From: " nstubbs1@... " <nstubbs1@...>

>Reply-low dose naltrexone

>low dose naltrexone

>Subject: Re: [low dose naltrexone] Losing the ability to walk.

>Date: Thu, 15 Jun 2006 00:25:07 GMT

>

>Steroids usually depresses the immune

>system while LDN is given to upregulate it.

>So, ???

> in Fayetteville

>

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[Guest guest]

Artie, good luck, I hope the solumedrol is more effective this time.We are all with you!

Nola

[low dose naltrexone] Losing the ability to walk.

Called Dr. Bihari's office today and spoke with a pleasant sounding and helpful man. Not sure who he was but he told the Dr. is recovering from a neck injury and is only doing telephone consults at $500.00 and hour. My reason for calling was to ask what he thought of my using iv solumedrol to quiet down an MS exacerbation. Asked him what else is it Dr. Bihari can offer me if I'm already taking LDN. He said probably not much but he did urge me to stay on the Naltrexone and said Bihari doesn't think much of steroids but added I have to do what I think is best for me. In the past, pre-LDN, steroids usually were like a miracle for me but over time they lost their positive effect. Long story short I called my neurologist tonight and have an appointment tomorrow for iv steroids. I am very down now and feel defeated. I so didn't want to go back for that but nothing is helping me. If I can't walk I can't work and if I can't work I can't survive. Not looking for sympathy, only telling it how I feel.ArtieLDN user since March 2005

[Guest guest]

--- In low dose naltrexone , " wescokk " <wescokk@...>

wrote:

>

>

> Artie, this is keith. I have been on LDN for 5 months now and don't

see

> any improvement. It seems like I'm going downhill. I also take

copaxone

> shots. My legs are getting weaker and dragging right leg. I have

taken

> supplements, etc, diets, even now I'n trying to get rid of yeast,

> because someone here told me LDN DOESN'T WORK WELL WITH YEAST. I

have

> had ms for 17 years, the last 2 getting worse and worse. I was

hoping

> LDN WOULD STOP THE PROGRESSION. I don't think it is. Victor gave me

some

> names of drugs to get rid of yeast and I might try them. Like you

said,

> you would do anything to keep walking. Let me know if the steroids

help

> you again. Do you think the LDN has stopped your progression? good

luck

> and let me know what happens. thanks

>

> keith

--

To the others who replied to my post I've thanked you privately via

email so as not to clutter up the board. Thank you again.

To , I have had MS since April 1988. I've used Avonex, Copaxone,

Novantrone, other stuff, and more iv solumedrol/prednisone tapers

than I can keep track of. My bones are like swiss cheese so I've been

told. I started LDN March 2005. The initial results were amazing. I

really thought this was THE miracle drug but the last few months my

symptoms have increased. Poor walking, unable to empty my bladder,

blurry vision, etc. I am very disappointed and down in the dumps.

Maybe I'm just going through a flare-up and the steroids will quiet

it down. I plan on staying on LDN because there really aren't any

safe options but I will what is necessary to keep functioning (bee

venom therapy?). I plan on going down swinging. No called third

strikes here.

Artie

[Guest guest]

Hi Artie, etc... I was really touched by your msgs, guys. I too have PPMS and have been facing life in a wheelchair these last 5 yrs. But when I read this comment, "If I can't walk I can't work and if I can't work I can't survive. Not looking for sympathy, only telling it how I feel", I had to reply. It may seem that life isn't worth living if you can't trust your balance or walk any longer, but believe me, there's a lot you can still do. Maybe you need a cane to help with stability or a wheelchair now-and-then to get you from your car to your desk, but most employers will eagerly accommodate special needs like this to keep you happily on their payroll. If you haven't gone 'public' about your condition at work, maybe you should think about it now. The main benefit of doing this is that you can seek your employer's help at fighting this crazy condition, rather than allowing them to wonder if you've been drinking at lunch, on drugs, etc. To conserve your strength as much as possible, don't hesitate about asking for minor accommodations (i.e. swapping cubicles with a workmate near the restroom or elevator, plus asking for the closest parking space, or (if they are able to) ask if they can think about allowing you to telecommute from home, coming in for team meetings, etc. Maybe your job has been as a car salesman, where walking was essential? If that's the case, perhaps it's time to look for a different sales job that you can do indoors at a desk. In other words, look for options to help you keep doing what you do, for as long as you can.

But if you're nearing the end of possible accommodations and you're thinking about retiring on disability, there's stuff you need to know. Firstly, here in the USA there's typically a 6-month waiting list from application for disability and first payment -- if they approve you. The most important thing NOT to do in this position is to cut-back your hours or go part-time! Disability income is based on your last 2 years of taxable income. If you cut-back your workload for what may be your last few years of employment, you are shooting yourself in the foot. You'll want to 'retire' on disability at the top of your game. I also recommend folks 'lay it on' a bit by going to their disability hearing at Social Security with a cane/crutches, or sitting in a (borrowed if necessary) wheelchair to look more helpless and avoid being turned down! If you look strong, these Govt employees are just looking to turn you down.

Hope this gives anyone in this position some food for thought...

Cheers, Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of rtee54Sent: Thursday, June 15, 2006 7:18 AMlow dose naltrexone Subject: [low dose naltrexone] Re: Losing the ability to walk.

>> > Artie, this is keith. I have been on LDN for 5 months now and don't see> any improvement. It seems like I'm going downhill. I also take copaxone> shots. My legs are getting weaker and dragging right leg. I have taken> supplements, etc, diets, even now I'n trying to get rid of yeast,> because someone here told me LDN DOESN'T WORK WELL WITH YEAST. I have> had ms for 17 years, the last 2 getting worse and worse. I was hoping> LDN WOULD STOP THE PROGRESSION. I don't think it is. Victor gave me some> names of drugs to get rid of yeast and I might try them. Like you said,> you would do anything to keep walking. Let me know if the steroids help> you again. Do you think the LDN has stopped your progression? good luck> and let me know what happens. thanks> > keith--To the others who replied to my post I've thanked you privately via email so as not to clutter up the board. Thank you again.To , I have had MS since April 1988. I've used Avonex, Copaxone, Novantrone, other stuff, and more iv solumedrol/prednisone tapers than I can keep track of. My bones are like swiss cheese so I've been told. I started LDN March 2005. The initial results were amazing. I really thought this was THE miracle drug but the last few months my symptoms have increased. Poor walking, unable to empty my bladder, blurry vision, etc. I am very disappointed and down in the dumps. Maybe I'm just going through a flare-up and the steroids will quiet it down. I plan on staying on LDN because there really aren't any safe options but I will what is necessary to keep functioning (bee venom therapy?). I plan on going down swinging. No called third strikes here.Artie

[Guest guest]

-Hey Artie,

I agree with the Dr. You have to do what is right for you.

>

> Called Dr. Bihari's office today and spoke with a pleasant

sounding and

> helpful man. Not sure who he was but he told the Dr. is recovering

from

> a neck injury and is only doing telephone consults at $500.00 and

hour.

> My reason for calling was to ask what he thought of my using iv

> solumedrol to quiet down an MS exacerbation. Asked him what else

is it

> Dr. Bihari can offer me if I'm already taking LDN. He said

probably not

> much but he did urge me to stay on the Naltrexone and said Bihari

> doesn't think much of steroids but added I have to do what I think

is

> best for me. In the past, pre-LDN, steroids usually were like a

miracle

> for me but over time they lost their positive effect. Long story

short

> I called my neurologist tonight and have an appointment tomorrow

for iv

> steroids. I am very down now and feel defeated. I so didn't want

to go

> back for that but nothing is helping me. If I can't walk I can't

work

> and if I can't work I can't survive. Not looking for sympathy,

only

> telling it how I feel.

>

> Artie

> LDN user since March 2005

>

[Guest guest]

In a message dated 6/14/06 5:11:53 PM Pacific Daylight Time, xltrt@... writes:

ArtieLDN user since March 2005

I understand your concern about mobility = work = paycheck !!

I am lucky((unlucky)) to be a designer/prepress operator and can make money while sitting ((instead of exercising and doing extra Physical Therapy work to keep me mobile longer)).

I hope you can use a scooter like I do, It gets me about the work place and enables me to go shopping and to the library or park with my wife and 2 1/2 year old. "I can participate in out of the house activities again!"

Of course my wife has taken on most of the chores now, but I still get him dressed, give him a bath, and clean up the kitchen every night. In fact I'm still Mr. Taxi since she doesn't drive.

I use caution, and observation and my hands to help my legs do the necessary foot work.

-

[Guest guest]

Rae,

That was some super input there Rae. I guess you can't work at a desk and collect disability too. Regardless of my blue license plate.

So how bad do you have to be before they consider giving you disability? If it is too hot I can't even get into my own house with a 4 inch high threshold. This old wall to wall carpeting troubles my lazy feet and makes my knees ache as the feet turn out for better clearance and drag anyway.

-

[Guest guest]

>

> In a message dated 6/14/06 5:11:53 PM Pacific Daylight Time,

> xltrt@... writes:

> Artie

> LDN user since March 2005

>

> I understand your concern about mobility = work = paycheck !!

>

> I am lucky((unlucky)) to be a designer/prepress operator and can

make money

> while sitting ((instead of exercising and doing extra Physical

Therapy work to

> keep me mobile longer)).

>

> I hope you can use a scooter like I do, It gets me about the work

place and

> enables me to go shopping and to the library or park with my wife

and 2 1/2

> year old. " I can participate in out of the house activities again! "

>

> Of course my wife has taken on most of the chores now, but I still

get him

> dressed, give him a bath, and clean up the kitchen every night. In

fact I'm

> still Mr. Taxi since she doesn't drive.

> I use caution, and observation and my hands to help my legs do the

necessary

> foot work.

>

> -

>

--

No such " luck " for me. I'm a blue-collar supervisor and walking is

part of the job. When the going gets tough...

Artie

[Guest guest]

I'd say it's when you look pitiful enough and have sufficient proof from your doctors, I guess!

Hugs, Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Saberkat7@...Sent: Monday, July 03, 2006 1:13 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: Losing the ability to walk.

Rae,

That was some super input there Rae. I guess you can't work at a desk and collect disability too. Regardless of my blue license plate.

So how bad do you have to be before they consider giving you disability? If it is too hot I can't even get into my own house with a 4 inch high threshold. This old wall to wall carpeting troubles my lazy feet and makes my knees ache as the feet turn out for better clearance and drag anyway.

-

[Guest guest]

I'll try the " reply to web post button " for this response. For me,

the stress and work load of my job took me down. The time in the

lab is actually cathartic. Even a really healthy person would have

a rough time keeping up. It's all of the reports that killed me

(time at desk using computers). I identified too many chromatogram

peaks in some trace analysis work. In the whole scheme of life,

it's not a big deal. I'll use it to get away from the stress

though.

I'm on medical leave now and don't really want to go back to the

pressure cooker and I'm seriously starting to look at long term

disability.

The CRABs haven't done anything other than make me sicker, which is

why I'm here looking for LDN info for my next neuro appointment.

(hay, gotta tie the message to LDN somehow....)

>

> I'd say it's when you look pitiful enough and have sufficient

proof from

> your doctors, I guess!

>

> Hugs, Rae

>

> _____

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of

Saberkat7@...

> Sent: Monday, July 03, 2006 1:13 AM

> low dose naltrexone

> Subject: Re: [low dose naltrexone] Re: Losing the ability to walk.

>

>

> Rae,

>

> That was some super input there Rae. I guess you can't work at a

desk and

> collect disability too. Regardless of my blue license plate.

>

> So how bad do you have to be before they consider giving you

disability? If

> it is too hot I can't even get into my own house with a 4 inch high

> threshold. This old wall to wall carpeting troubles my lazy feet

and makes

> my knees ache as the feet turn out for better clearance and drag

anyway.

>

> -

>