My husband's ppms progression

[skyeblue]

Hi all:

My H and I are embarking on our 17th year in his PPMS journey.

His disease has progressed as follows:

1995 -- experienced tingling in his big toe that wouldn't go away ( no other symptoms).

1997 -- 2000 -- very gradual weakening of his left leg, but no other symptoms - went for a lumbar puncture in 2000 and neuro dx him as possible ms

2000-- 2003 -- left leg continues to weaken -- husband begins using cane in 2003 (still no other symptoms other than occasional ms hug and burning and tingling in both legs -- begins taking baclofen )


2007 -- husband begins physiotherapy for strengthening. Begins using two canes and we buy a scooter for outings.

2007 - first uti lands him in hospital - dx urinary retention and begins self-cathing.

2010 -- husband goes into WC fulltime -- still has full upper body strength.

2012 -- still in WC, no huge changes from 2010 -- still has arm and hand strength. Can transfer alone and do own ADLs.


So that's where we are. My hubby is 63 and I'm 59. I keep praying his PPMS won't take any more from him than it already has. Anyone else here with a similar progression?

[jk]

You are about 5 years ahead of me (1999).Mine is more of a everything so far, but not so severe for any one thing but I have had eyes,balance,ms hug, bowels,bladder and such. My legs now are going I think and I do not think I will be walking much in another 6 months if things keep up. Thought I was doing pretty good until about a year ago when things changed gears. Sorry to hear about your problems but it sounds like you are having more severe problems from the waist down. I have the form of ms that does brain and spinal cord,what does your husband have?

[Thinkimjob]

Hello, skyeblue, best wishes to you and your husband.

There's nothing more anyone can say, except wtf is a cure?

No good thinking about that.

[skyeblue]

Thanks for your responses and I'm sorry you both have to deal (struggle) with ms.

My husband stopped going to his neuro about two years ago as he really offered nothing other than "see you in a year." There are no meds for PPMS, so he just takes baclofen to help with spasticity.

His ms is mostly in his spinal cord -- I believe this is characteristic of ppms. His cognitive ability has not been affected.

Wish we both knew where this is ultimately headed. My greatest fear is a nursing home, when I can no longer handle caregiving. It's so devastating.

[barryrado]

hi skyblue, what a difficult topic this is. im ppms for 20 yrs. my progression has been moderately slow, until now. i have been controling progression yhru lots of exercise and diet. it was fun and empowering. then came ampyra and wow that helped a lot. i had to move in with a friend so i didnt have to climb stairs any more. then i had to start treatment for liver disease. the treatment uses chemo drugs. 3 weeks after starting treatment my legs are failing me. such a difficult thing to grasp.

[Windwalker]

Originally Posted by skyeblue

Thanks for your responses and I'm sorry you both have to deal (struggle) with ms.

My husband stopped going to his neuro about two years ago as he really offered nothing other than "see you in a year." There are no meds for PPMS, so he just takes baclofen to help with spasticity.

His ms is mostly in his spinal cord -- I believe this is characteristic of ppms. His cognitive ability has not been affected.

Wish we both knew where this is ultimately headed. My greatest fear is a nursing home, when I can no longer handle caregiving. It's so devastating.

Hi Skyblue,

I am PPMS, my MS is mostly in my spine...major understatement. I also stopped going to my MS Specialist Neuro. at a "top rated" clinic because there was nothing they could do besides prescribe Ampyra. I take Baclofen and have to take Tramadol also to control neuropathic severe discomfort in upper body/shoulders and upper back. Also take Ampyra to increase strength and energy.

My cognitive ability has been affected as I'm sure your husband's has as well. Hard to tell as I still have enough mental capacity to take on almost anyone...but it has been diminished. Brain mass - Normal.

My greatest fear is also being unable to care for my basic needs. I am 50...I wonder what I will be like at 55-57. If I progress like I have over the last 5 years, I will be totally bedridden by then. However, I have leveled off to a great extent but still have noticeable progression, I.e. loss of fine motor skills on left hand, on roughly a semi-annual basis.

If I progress at the rate I have over the last year, I think I will still be independent at 55-57...but only God knows.
Having said that truth, why stress over it? Do everything you can to slow the MS down...stress free environment, as much exercise as he can handle...A SOUND MS DIET...and definitely no smoking or alcohol.

PPMS is devastating...I have lost my career, my family is in tatters...every single thing I do takes an incredible effort...I'm irritable and can be kind of rough verbally at times.

If your husband is doing everything he can, then hand it to God and live in joy and peace. If your not religious or an atheist...find something to help carry all the tremendous burdens that come with PPMS. Good luck

[ms er since 06]

I'm in the same boat as all of you. But last month I had two infusions of Rituxan and I at least feel better - not as much nerve pain and spasms. I hope it slows the progression; only time will tell. My neurologist wanted to try this because she said there could be inflammation on the MRI that cannot be seen. It's worth a shot.

[Rachaels Rainbows]

Hi,
My progression has been similar to your husband.
2003 - numbness in my right arm started the whole thing and from there I have been on a steady decline and am in a power chair full time.

Things are looking up, though, according to my neurologist, once a person reaches their early sixties their MS has a tendency to level off.

I am almost seventy and I have had no evidence of new lesions for four years.

I still have to exercise and keep my strength up and of course, since I am growing older be aware of the hazards of old age!

[knuckle]

I've had a similar progression over the past 20+ years.

Here's the good news...with men, as testosterone levels decrease so does disease progression. Testosterone seems to have a detrimental effect on MS, while Estrogen seems to have a protective effect.

I think the MS drugs are less effective at slowing disease progression in men versus women and this is also the result of hormones.

I now take Low Dose Naltrexone (LDN) and believe it should be the very first drug taken upon MS diagnosis because it is the only drug that addresses this hormone connection. LDN works by stimulating endorphin production and endorphins are hormones that modulate T-cell activity in the immune system.

There is a sticky, "Useful LDN Information" on the Medications Forum if you want to learn more.

It is also worth noting that a clinical trial was done for PPMS using LDN:

A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis.

http://www.ncbi.nlm.nih.gov/pubmed/18728058

"Neurological disability progressed in only one patient."

[msessy]

Originally Posted by skyeblue

Hi all:

My H and I are embarking on our 17th year in his PPMS journey.

His disease has progressed as follows:

1995 -- experienced tingling in his big toe that wouldn't go away ( no other symptoms).

1997 -- 2000 -- very gradual weakening of his left leg, but no other symptoms - went for a lumbar puncture in 2000 and neuro dx him as possible ms

2000-- 2003 -- left leg continues to weaken -- husband begins using cane in 2003 (still no other symptoms other than occasional ms hug and burning and tingling in both legs -- begins taking baclofen )


2007 -- husband begins physiotherapy for strengthening. Begins using two canes and we buy a scooter for outings.

2007 - first uti lands him in hospital - dx urinary retention and begins self-cathing.

2010 -- husband goes into WC fulltime -- still has full upper body strength.

2012 -- still in WC, no huge changes from 2010 -- still has arm and hand strength. Can transfer alone and do own ADLs.


So that's where we are. My hubby is 63 and I'm 59. I keep praying his PPMS won't take any more from him than it already has. Anyone else here with a similar progression?

I AM SO GLAD THAT YOU SHARED YOUR HUSBANDS LONG JOURNEY LIVING WITH MS. I THINK THAT YOU WERE A CARING SUPPORT SYSTYM FOR YOUR HUSBAND, WHICH ENABLED HIS PROGRESSION TO MOVE SLOWLY. YOUR HUSBAND IS THE SAME AGE AS ME. JUST READING YOUR STORY, IT GAVE ME HOPE,
GBU AND YOUR HUSBAND.

MSESSY