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.

[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."

[Windwalker]

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.

[skyeblue]

Thanks everyone for responding to my post.

I appreciate hearing how others with PPMS are doing. As for LDN he isn't interested and is still on the lowest possible dose of baclofen.

Windwalker thanks for that advice. I tend to fret alot, but I think mostly I'm frustrated that there isn't much I can actually do to get MS out of our lives.

When my H was dx ( whew still seems like yesterday), I didn't think much about it because it didn't really affect him much (just more tired when it came to walking). The last four years have been tougher as I've watched him struggle to walk and then finally have to relent and go into a wheelchair. We always thought that when we retired we'd be able to go anywhere and do anything. Now of course all that has to be rejigged.

"Let go and let God" are words I need to live by. Just hard doing it some (or most) days.

Cheers

[nana5406]

My husband has PPMS too

We are in some of the same places. My husband will be 60 in May. He has PPMS and is paralyzed from the neck down.

We have in the past year gotten a caregiver for him 5 days a week 8 hours a day. I just could not do it all anymore. That was huge for me. I felt like I was letting him down. He did not feel that way however. He felt like it was starting to effect our marriage and we needed to do something.It is much better , I can at least go out and not worry about him.

He mostly is on his voice actavated PC doing some financial work and playing chess. We feed him, bath him , transfer him and cath him.

We used to go to Ft Myers Fl in the winter but can not fly anymore. We wish we could still go and are trying to get some ideas on how to get there, and where we would stay if we could go.IT's hard on both of us.

If all of you stopped going to doctor how do you get your meds? My husband has been on the same meds for years. We too go see nero 1x a year , same story sorry nothing new for you. What gets me is they have no answers to what I would think would be easy questions, like WHERE do we go for help?

MY question are what do I do when my husband progress to having issues with swallowing, you can see it is getting harder for him to breath. When he talks he coughs, he can't blow his nose anymore.I would like to learn how to clean his nose for him, what to do if he sokes. We just can't sit here and wait for 911 to come.

Neither or Nero or Primary care doc has any answers. It makes me so mad, you would think we are the first people to get this bad.There has to be someone that has some answers for us. Someone that has been through it and can help.

I am hoping to find that here. I don't know if this has helped you except to say we have been in your shoes. We try to stay possitive and for the most part are. It is just very hard to watch your husband slip away bit by bit.

Both of us feel blessed and would love to help anyone in anyway we can. You know pay it foward. I hope this has helped you in some small way


**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[skyeblue]

Nana:

My heart goes out to you and your husband. This is such a devastating disease. But what a wonderful example you are of a devoted and loving spouse. God Bless you.

How long has your hubby had ppms? I am always fearful my husband will also end up totally bedridden so I pray every night that his progression will level off.

He gets his meds from his neuro even though he doesn't see him. I suppose I should try to get out there but it does seem like a gigantic waste of time and effort for little return.

I wish you and your busband all the best in your continued fight.

My thoughts are with you both.

[nana5406]

My husband was diagnosed in 1996 by 1998 they called it ppms. He has been confinded to a wheelchair for about 5 years.My worry as I said before is how to handle what will come next. No one wants to talk about it. I however feel the need to be somewhat prepared. Still working on getting a lpn or rn out to the house to show me how to clean his nose, and help him when he starts choking during a cough. Seems like something a nurse could show me. Have not found the right agency yet. I know there are some tricks I could learn. Thanks for letting me vent

[Windwalker]

If all of you stopped going to doctor how do you get your meds? My husband has been on the same meds for years. We too go see nero 1x a year , same story sorry nothing new for you. What gets me is they have no answers to what I would think would be easy questions, like WHERE do we go for help?

MY question are what do I do when my husband progress to having issues with swallowing, you can see it is getting harder for him to breath. When he talks he coughs, he can't blow his nose anymore.I would like to learn how to clean his nose for him, what to do if he sokes. We just can't sit here and wait for 911 to come.

My PCP prescribes my Tramadol, Baclofen, Valium, any Opiate painkillers (Norco 10mg) and when my COBRA ran out after 18 months and could not get Ampyra anymore, he wrote the Rx for the 4-AP. A PCP can write a Rx for any FDA approved drug. I'm fortunate that my PCP knows all too well the horrors of advanced MS.

Concerning clearing his nose and throat...try those suction devices that are used on infants. On a much larger scale of course. It works great on our precious babies, don't see why a "larger one" would not work on a grown man.

[skyeblue]

Nana I responded to your other thread.