27yrs

A forum to talk about the general challenges of daily life with MS.
robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

27yrs

Post by robbie » Tue Feb 05, 2019 11:19 am

Feels like a life time bed bound , bed pan , pee bottle the whole nine yards. 53 yrs old what now?
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

ElliotB
Family Elder
Posts: 1917
Joined: Mon Feb 03, 2014 4:08 pm

Re: 27yrs

Post by ElliotB » Tue Feb 05, 2019 1:55 pm

Welcome to TIMS. I understand what you are going through. What type of thing have you done for yourself? It may be time to try something new... things have changed/new unique discoveries have been made in the last 27 years - there may be new things to try that could still help you even at this point.

robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Wed Feb 06, 2019 9:09 am

I haven't seen my neurologist in 3yrs, 7 yrs ago I was trying antibiotics that I got from my family doctor and they really helped . When i told her she said nope antibiotics do nothing even going as far as it being a placebo effect. Then when minocycline got approved for the treatment of ms I was pissed, she gave me no support when I took them on my own like I was trying to tell her job. I've probably got the yrs wrong it was longer ago .wish i had got her support and stayed on them.
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Fri Feb 08, 2019 1:52 pm

So many drugs and treatments now it's looking good for newbies 😊
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

ElliotB
Family Elder
Posts: 1917
Joined: Mon Feb 03, 2014 4:08 pm

Re: 27yrs

Post by ElliotB » Fri Feb 08, 2019 2:52 pm

"it's looking good for newbies"

True but there is ample evidence now that those who have had MS for a while can also be helped, contrary to common beliefs that were the norm just a few years ago...

robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Sun Feb 24, 2019 7:34 am

Just watched a movie this morning called 50/50 about a guy having those odds of living with a cancer diagnosis. I'd take those odds anyday over a MS diagnosis where the best is a drug might help slow it down but maybe not. Diseases that are chronic and progressive from the time you get it till you die is not fair to anyone , everyone deserves a chance to get better.
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Tue May 21, 2019 8:56 am

I think about waking up pain free, spastic free, mobility is back and I just swing my legs on to the floor and stand with strength and balance. Able to discover what life would have been ,who you would have been as an older person with all the spoils of working hard in life. Spoil my wife for eternity...
Just like to wake up that way once and get busy with living :)
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

User avatar
jimmylegs
Volunteer Moderator
Posts: 12024
Joined: Sat Mar 11, 2006 3:00 pm

Re: 27yrs

Post by jimmylegs » Wed May 22, 2019 5:42 am

hi jax, feel like sharing a bit more of your back story? i am curious about info and xp that has come your way, and what steps you may have taken in response. maybe there are some options that have not yet been explored...
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

ElliotB
Family Elder
Posts: 1917
Joined: Mon Feb 03, 2014 4:08 pm

Re: 27yrs

Post by ElliotB » Wed May 22, 2019 9:36 am

There are a handful of people who have made 'miraculous' recoveries even after having dealt with MS for many, many years like you. And the good news it that different approaches have worked for different people There is always hope!

robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Wed May 22, 2019 11:07 am

Hi Jimmy, Elliot you guys know my background it's robbie had to join again, must of said something wrong and got the boot. I understand if you want to again I'm not much of a positive thinker . Wish I could change
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

User avatar
jimmylegs
Volunteer Moderator
Posts: 12024
Joined: Sat Mar 11, 2006 3:00 pm

Re: 27yrs

Post by jimmylegs » Wed May 22, 2019 12:31 pm

oh hi there :D lol i had actually thought 'this jaxson reminds me of robbie'
i don't know if we ever managed to convince you to try some intensive therapeutic nutrition. in case you have not been following along intently ;) i feel like 13 or so yrs of xp have added some value to any related info i could send your direction these days... your call, as always :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Wed May 22, 2019 2:39 pm

Thanks Jimmy I'm really tired of trying at this point, when I had more strength I had more devotion to keep trying anything and everything. So hard to even keep the mind ok, I can litterly touch fingers when i put my hands around my thigh. I was 260, struggling with what I've become .
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

User avatar
jimmylegs
Volunteer Moderator
Posts: 12024
Joined: Sat Mar 11, 2006 3:00 pm

Re: 27yrs

Post by jimmylegs » Wed May 22, 2019 3:28 pm

i figured, but thought i would check anyway.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
Family Elder
Posts: 1283
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Sat May 25, 2019 10:37 am

Is there any one else at TIMS that is in a similar situation as mine ? Just to talk and share some challenges. PM me
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

ElliotB
Family Elder
Posts: 1917
Joined: Mon Feb 03, 2014 4:08 pm

Re: 27yrs

Post by ElliotB » Sat May 25, 2019 11:41 am

With regard to your weight issue your situation is not unique, I too have lost a lot of weight and continue to do so. And I can put my fingers around my thighs too. Part of my problem is for the past two to three years, I am rarely hungry. At this point, I am down to eating one meal a day and I often have to force the meal down because I have no appetite - hard to eat when you are not hungry and eating is not enjoyable either when you are not hungry. There are really no simple solutions to this other than eating more and eating higher calorie foods, which I am trying to do but is not easy especially when I am not hungry. Also, I have recently tried medical marijuana to try and stimulate my appetite, doesn't work for me in that regard unfortunately but I am experiencing other benefits with regard to pain reduction and improved sleep (slightly improved).

But ultimately being a little underweight is better than being overweight. Just look at why 'experts' think the Japanese have such a long life expectancy and are typically so healthy.

As far as your energy level goes, there are things you can do to boost that includes dietary changes, supplements and exercise. Are you doing anything to try and improve your energy level?

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