I do feel better in that my neurologist knows there is no med he can offer me, the years on Rebif - I really did feel lousy, no more hours in a MRI (like why, we know I have PPMS. Duh)

My neuro prescribes on a need to basis. I take some anti-pee med (Desicare), some puppy-upper (Amantadine) to go from dead to half dead . AnAntibiotic to ward off UTIs and now we're done. Sometimes I take one Vicodin for Neuropthic pain but really to help me sleep.

I refuse to try anything that doesn't help, waste time shooting the tube,or feel lousier than Age and MS can make me.

Right, Kicker. I'm SPMS and refuse any meds that don't make me feel better and/or cure me.:)

I'm thru being a guinee pig, although I kiss the feet of those who are.:grouphug:

My H has PPMS
 

Hi

My husband who is 61 has PPMS dx in 2000, with symptoms since 1995. It started out with tingling in his big toe which gradually progressed to a limp in his right leg. He progressed very slowly and only went in a wc this year after 14 years since the tingling started. His arms and hands are unaffected and he can still stand for short periods and transfer alone. He self-caths due to urine retention and to prevent utis.

I know that even PPMS is variable and outcomes can range but I worry alot about how this is all going to end.

Does anybody know of anyone with PPMS who had it for years and years and didn't end up bedridden?

My husband doesn't think about the future and I guess he's smart. But I worry alot.

thanks for any responses.

N:)

Welcome Nancy, nice to meet you.:) So sorry about DH's DX. It's hard to be the DW and caregiver and to watch your spouse progress with this dam disease.:(

Your DH is right though, worrying about the future is not productive and the stress can only make the disease worse. One day at a time. Has he applied for SSDI yet?

Is he on any MS meds? How are they working?
I'm SPMS and on LDN (Low Dose naltrexone). The MS meds don't seem to work for anyone who is not RRMS and don't often work for even them.:rolleyes: I always recommend for all of us to try LDN. It can't hurt, unnless you you're allergic and could help in so many ways.

I'm glad you found us stay with us and best wishes for you both.:hug:

Hi nancymarie, and WELCOME!

I don't have PPMS but have SPMS. I've been reading posts on MS boards for years now and am sure I've seen some by people with PPMS who have had it for years. I'm sorry I can't recall any more details.

I agree with Sally and your husband though. It's probably better to take things one day at a time and not worry too much about what the future might hold.

Hi Sally and Agate:

Sally my H does not take LDN - he refused because he didn't think it would really help. He just takes a small amount of baclofen for spasticity and some tylenol for pain. His biggest issue so far has been the burning pain he has in his feet.

Agate thanks for your post. I know some people progress quickly with PPMS and end up quads while others fare better. I just hope that since H has progressed very slowly since dx that he will be old by the time he reaches the end and not have to deal with anything bad for too long. In the meantime we can hope and pray for a treatment that stops progression.

hugs

M

Nancy
I am PPMS, DXed in 2002. NOW, I can look back and see beginnings in 92. I have no tingling, was dizzy and then foot started dragging. I'd read MS was devastating and thought "not for me". But I went from Canadian Crutches to walker to chair. My left arm and leg are useless but cognitively I'm pretty good. Some Short Term memory loss but I am 55 and wonder "Is it age or MS?" MS hits everyone so different. There are no drugs that helped me, my Neuro and I have an unspoken agreement of "hey we tried" See you next year he says, here's my e-mail address if anything occurs." I do what I can, get full disability to add to family money pot. I do my best. No one knows the future or what will happen. A bus could hit us or a stroke tomorrow. An aneurysm killed my cousin's husband and also my female neighbor suddenly. Neither was past 37. Anyone. Maybe my life is better than others who have nothing wrong. Who knows.

hey NM. MS does not really have an "end" that I am aware of.

I am PPMS.

I was dx'ed in 2005 and still walking, albeit very slow and I use a walker about 95% of the time. I quickly got a wheelchair that pulls apart into 5 easy pieces that fit into the trunk. It takes DH or DD about 1 minute to take apart or put together so that outings are more manageable. I got it before it was really needed and despite a desire to stay home, I am glad I have it so that DH and DD can entice me to go places.

I started with feet issues, probably 10 years before dx. They still burn or become icy cold. No prescription meds really seem to work very well. LDN did not work for me.

I do not take much meds at this time. Too little results so a waste of money, IMHO.

I had a couple of really bad days but yesterday was an okay day. Never symptom free, just more tolerable.

I don't really look into the future of where I will be in one year because it is a total unknown. All I know for sure is that MS does not kill, it just makes life different, mostly not what I planned to be doing.

61 and WC, not bad at all from my point of view of MS. If he ends up in bed more than outside, get a good media system. Buy a few plants for the room he uses the most. Cook new weird recipes in an attempt to become a chef.

I can't control the bad, I can control the good.

Great post, Cyn..:):hug:

Cyn is great. Listen to her. I do and I'm a cranky old lady (though she is older than me 8-D)

Thanks for that post Cyn!

Well, it's official. She wrote PPMS on my disability letter. (neuro). Go Tuesday to sign contract with lawyer and wait on a court date from there. I am finally in the last stretch of this stupid disability thing. It seems I have been repeatedly denied based solely on my age.

Like I had a choice of PPMS hitting me like a Mack Truck at the age of 27 and making me incapable of returning to work by the age of 29! I mean how dare I not choose to wait until I was over 55! What the heck was I thinking??

What can I say? This disease has made me bitter at the age of 30. My shrink says I use sarcasam as a coping mechanism.... yes, she really does charge my insurance $100 an hour to come up with that conclusion.

I can see the finish line but I can't quite reach it. I know it is coming.

I'm sorry to see this Forum is so inactive.

I'd like to hear more from people with PPMS -- what your progression is, how you cope day to day, whether or not some of youlive alone. Tips on meds and coping.

My H has PPMS dx in 2000 but with sx starting in 1994. He worked until 2008 and just went into a WC this year. Still has upper body strength, just can't walk.

I wonder how this will all end? With him in a nursing home? I'm more scared than he is as he refuses to think about the future.:frown:

Sigh.

Was dxed 2002, think I had stuff I now recognize in 1994. In a chair 24/7 since 2009. Mostly have physical problems (no walking) but other than a little MCI (Minor Cognitive Impairment - Is it age or MS?) doing OK. Pain level not great (Neuropthy) but everyone is so different from another on this terrible Journey.
Part of thanks goodness I'm 55, no problems when raising my kids, Thanks goodness it's me and nothing for them but this ride isn't over yet. I hope little else will happen but won't be surprised if it does. My Neuro (Without words really) sees theres nothing he can do for me - no meds, etc. He no longer asks me to get MRIs, we both know I have PPMS and I hate them and so why bother with them? He answers my e-mails within 24 hours and will do most things I ask for if something comes uWas dxed 2002, think I had stuff I now recognize in 1994. In a chair 24/7 since 2009. Mostly have physical problems (no walking) but other than a little MCI (Minor Cognitive Impairment - Is it age or MS?) doing OK. Pain level not great (Neuropthy) but everyone is so different from another on this terrible Journey.
Part of thanks goodness I'm 55, no problems when raising my kids, Thanks goodness it's me and nothing for them but this ride isn't over yet. I hope little else will happen but won't be surprised if it does. My Neuro (Without words really) sees theres nothing he can do for me - no meds, etc. He no longer asks me to get MRIs, we both know I have PPMS and I hate them and so why bother with them? He answers my e-mails within 24 hours and will do most things I ask for if something comes up. I think this thread gets fairly unactive cause there's not much to say.
I think your husband is correct in not thinking and analyzing his journey. No one knows what will happen next. Doctors and others can guess but who knows?

Thanks for your response Kicker.

H hasn't seem his neuro in a year -- again for the same reason -- nothing can be done.

He only takes low doese baclofen but won't talk much about his discomfort. IN fact he pretty well wants to deny what's happening most of the time.

I guess that's his way of handling things and I have to accept it.

Just wish this disease would plateau out,leaving him with the function he still has. Don't suppose that ever happens though.

I am Secondary Progressive too!
 

Was dx in 1987 able to return to work in 1991, worked until 2001 (had an understanding employer as I had 3 major relapses during that time that kept me out 2 months or more besides just days I was not up to working). 2001 started having cognitive problems that interfered with my ability to do my job followed by mobility problems that forced me into retirement. Was given Avonex while in hospital in 2001 has a serious allergic reaction & almost died. After that never did return to work because between the cognitive problems & mobility problems I was unable to do my job. 2004 I was put on Rebif & had a "honeymoon period" lasting about 14 months where I almost forgot I had MS. But then I built up antibodies to the Rebif & had liver enzymes that were dangerously high. After a few months off Rebif I was tried on Copaxone but again had a serious allergic reaction. 2005 told I had SPMS. No medication (except to treat specific symptoms) from 2005 to present. Recently saw a new neurologist considered one of the best in treating MS. He gave me blood test for JVC virus hoping to put me on Tysabri. I tested POSITIVE so TYSABRI WAS OUT. Due to other medical conditions there is presently no medication that I can take.

The cognitive problems & fatigue severely limit my quality of life. I also have mobility problems use either a rollator walker or power wheelchair. Have problems with fine motor control & using both hands (more left than right - have a contracture). I fall frequently & 17 months ago it became unsafe for me to live alone & I moved in with my mom.

I have a hand controlled van with a wheelchair lift that I can use on my "good days" but I never travel far & because of light sensitivity (head lights) I rarely drive at night.

I depend on my laptop for everything my handwriting is illegible. I have a home health aide to help with "the basics" & with cleaning my area 49 hours per week. I have a small service dog that alerts to my diabetes but also knows some mobility tasks as well.

I am trying for form a nonprofit corporation to help adults with physical disabilities and should have all the pieces in place before I turn 50 at the end of November.

The way it works is I do what I can when I can & just accept that some days I can do little or nothing.

Wheelchair Kamakaze, who also has PPMS, says in his blog "It's the red-headed step-child of an orphan disease".
Being a red-headed orphan stepchild myself, I get it.

Does anyone here deal with swollen legs and feet due to being in a wheelchair and not moving your legs?

My H with PPMS has edema in both legs. Other than trying to keep his legs elevated for part of the day what else can he do?

thanks

Stretch and flex your leg and butt muscles, when you are sitting, it keeps the blood flowing.

I haven't had this awful problem since I've been on LDN. It could be coinsidental? I have a tendency to thank LDN for a lot.:)

Elevating the legs twice a day for at least 15 minutes each time--that's what a physical therapist told me to do. She stressed that the legs have to be higher than your heart.

The PT people used a foam block for elevating the legs but I'm using a plastic laundry basket.

I'm in a chair, one foot (my bad side) gets all swollen. I need to elevate them.

When I lay down in bed, my feet get colder, not warmer. I think it's blood flow. Anyone else? Sitting up in the chair, they're warmer.

Me too, kicker. My feet get so cold in bed that I always wear warm socks at night.

Isn't that funny, I'm just the opposite, my feet get too warm at night and I have to kick the covers off of my feet. Otherwise I roast.:)

Thanks for the info.

Doi you think one of those boot shaped leg massager devices would be good?

Thinking of getting one for H.

I think part of my problem is with Baclofen, that it makes my ankles swell. Plus I have some jerk spasms. DH rubs them when I ask. Elevating legs makes me spasm worse.:( Stuck between a rock and a hard place.

DD is becoming a massage therapist but too busy for me to get the benefits!! She did a short massage yesterday. I bought her a portable table and am having her work off the payments with massages!:)

Once in awhile (I try not to), I take Hydro/Acetam (generic Vicodin - More for sleep when I'm afraid discomfort might interfere. (love my sleep). Would it and LDN clash? Want to try LDN, could easily stop Hydro/Acetam, (take maybe 1 every week or 2)

Does PPMS ever level off?
 

Does anyone know if PPMS ever levels off and does not proceed to total disability ( bedridden, unable to move both arms and legs)?

I don't have PPMS, I guess I'm labeled SPMS, after having been RRMS for many years. MS is a mean disease and has no favorites. It's an equal opertunity employer.:rolleyes::mad:

IMO, PPMS starts out progressive and you never really have a remittance, but I believe there is a platteau for PPMS. It may be different for each individual, but will happen.

There is only one Type of MS that never stops until you are bedridden or die and it is very very rare. I don't know anyone who has had it, so don't worry about that.

Be well!!:hug:

Thanks for that Sally. It's good to know that H hopefully won't have to end up that way. He stays in the present mostly but it's I who get worried about the future. This disease is mean enough without taking even more away.

hugs
]M

we all hope and pray -- amen and every morning you mist remind yourself --- you can both do this --
-
i am 65 -- not in a chair or brdridden -- and have had spms since 2004 ---
take care of you - --- dvora

I agree
 

I'm only interested in hearing from others with PPMS.

Although you say you're not interested in hearing from anyone who doesn't have PPMS and although we do not differentiate between those with PPMS and those with SPMS in this thread, I'm sure our members with PPMS would be happy to help you if they knew what you wanted.

I personally do not have PPMS but other members do, and although you only want to communicate with other PPMSers, we MSers with RRMS and SPMS might still be able to help you out with with symptoms that we've gone through ourselves over the past 20 or 30 years. You never know!

May I suggest that you give us a little more information about yourself? There are a number of us in your age group and older, and some of us have been diagnosed for many decades. I was diagnosed in 1977 and there are others who precede me.

Hello Gertrude and welcome to NeuroTalk.

Although I do not have PPMS I am 50 years old and have been diagnosed for 26 years with symptoms that go back to childhood. As has been mentioned we do have members with PPMS but it doesn't matter what type of MS you may have many of us share the same symptoms.

I was dx'd in 2005 and have PPMS. Is there something I can do for you?

Some of my best Board buds don't have PPMS. MS is so weird. Some PPMSers (some) are way different from me like RRMSers (some) are.

Wheelchair Kamikaze(Marcstck) is a PPMSer who writes a blog (love it - funny, informative on so many MS issues. Another PPMSer writes a blog and I often don't relate to it). But they are not 100% sure Marc has PPMS, they say Maybe it's something else, not that we know what. So I often use symtoms as what works for me. Koala and Salpal don't have PPMS, don't tell them I said this, but both are really OK (I hate saying nice things!). AARCYN is PPMS and we have an e-mail relationship but are more similar as Moms than PPMSers. My point is no matter what your MS title, everyone is so different from each other. I think with other's help, I started this thread hoping some PPMSers would present some answers. The answer was there are no answers. One of my favorite board buds was a Tourette's person who liked the MS posters (we are a fun group)(wasn't Who Moi great?). And Neuronixed Craig , He's not an MSer but is one of our own anyway. For so much stuff, his is a voice of knowledge to listen to. I can't walk but have minimal pain and seem ok cognitively. Others can walk but have burning and numbness (which I've never had).

Maybe Gerty just doesn't like us, I'm SPMS and I'm hurt. Not really-just kidding.:)

I re-read thread. We are goofy, but really good stuff gets said, then we're goofy, then really good stuff gets expressed. What's not to like?

PPMS sufferer
 

I wonder if others with this condition have as hard a time to move their bodies out the bed or chair as I do. I feel like I am wrapped up in a space suit made out of heavy lead and I can't move very well...my right leg is always stiff and I get that 'drop foot' when I try to walk like I used to. I have had no one to talk to and I am not a fan of the computer. I hope to get a real PT soon. I've gone through countless chiropractors and massage therapists. I finally found one doctor who begged me to see a neurologists (for the second time) and I got diagnosed. My body is always tight and stiff all over. I'm worried I won't make it to retirement...I'm 55.

The answer is yes, I have symptoms similar to you. Because it is progressive, I know it will not be better but I just hope it stays the same. My progression has been relatively slow but if I think back to 2005 when I finally had to go to the doctor and find out why my body was acting that way, I was so much better then than I am now.

I did PT and have massages upon occasion.

Getting in/out of bed, chairs is more and more difficult. It is depressing. I have plenty of "discussions" with my psychiatrist about my supposed acute depression. I think he is wrong about my dark perspective, I believe I have a perfect right to be sad/mad.

Over the past years though, I just struggle to get up and just keep doing what I do. I use a rollator (PT had recommended it). I do whatever it takes.

Am I happy? Yes and no. I just deal with it, like you do even if our future is not nearly what I had thought it would be. I envy my neighbor, a 76 year old woman who walks every morning and does her church stuff, etc.

I keep most of my dark thoughts to myself. Saying it aloud to most people puts an awkward spin on any relationship.

In this forum, I have found a few people that I talk to that really understand so I can vent here.

I hope that helps...a little. I am toying with the thought of getting a working dog. The mutual help/responsibility may improve my life.

My only problem is that I want to just be given the dog and not do the research needed to get the help!

We have 2 dogs, neither a working dog, just mutts from the pound but both would do what they could in a situation. I do love them both, I'm never alone. I always carry my cell phone to call the EMTs when I've fallen and can't get up. I can be sort of dignified with them in my underwear when needed. If I couldn't laugh, I'd always be crying. MS sucks no matter what kind.