SPMS - How are we doing???

[kellygrn]

Side Effects

Have you looked at the side effects of steroids? I worried about bone deterioration.

KK

[Seasha]

Have you looked at the side effects of steroids? I worried about bone deterioration.

KK

Yeah, I worry about that too and have opted out of it. I have osteopenia already and my mom has osteoperosis and don't want to downslide any further!

[TayRiver]

Side Effects

Have you looked at the side effects of steroids? I worried about bone deterioration.

KK

Hi Kellygrn;

Yes I did a lot of research into the effects of steroids and I do have a bone density scan done every six months. For me the risks of disability from the steroids is less than the progresion of the disabilities that I already have from MS.

My MS Specialist keeps a close eye on my and if we start to see changes because of the steroids then we will have to look at what other things could be used to allow me to continue to work.

I know other would not take the risks involved but I have too for now..

[Gary B]

How are we doing?

Hi Seasha,
I was diagnosed in 1997 and probably became SPMS about 7 or 8 yrs. ago. This is a summary of treatment that I've tried: 9 1/2 yrs. of Avonex, two bouts of solumedrol infusions, participation in a halted clinical trial, 3 yrs of 4-AP, 6 mos. of Cytoxan (chemo), and now Tysabri (4 infusions to date). I am continuing to lose strength and mobility. I use a scooter at home, 2 canes for short distance, and a wheelchair for longer distances outside of our home. Bladder control has, increasingly, become an issue to deal with. I suspect that self-catherization is in my future. Urologists reside in a house-of-horrors. My personal experiences with MS and reading forums leaves me to believe that we are a desperate bunch, willing to give anything a try and neurologists feel compelled to find things for us to try. Sorry about being so negative, but my normal positive outlook is suffering today.

[lovedbydogs]

SPMS

My specialist has never really determined whether I am SPMS or PPMS but said it doesn't matter, I'm progressive. Since being diagnosed a year and a half ago I've only been on LDN, which I got from my PCP and I did try Copaxone. My recent visit a week ago was a little discouraging. I had felt very well all fall until mid Nov. then I could feel a decline again, symptoms worse, lots of fatigue, etc. He told me to quit the Copaxone and that he thought it was time for me to start IVIG. I had the preliminary blood work, will go for another MRI, the third one in a little over a year and then I meet back with him to discuss starting the infusions. He'll have to come up with a financial source, because I sure can't afford it. he told me not to worry about it and to let him worry about that part. I'm nervous about the IVIG, but he thought it was the only trick left in the bag. I still do very well and am very mobile, so it is hard for me to imagine it has come to that.

[tellnhelen]

It REALLLYYY helped. Now I can walk up and down stairs (only one flight) using a hand rail and my cane. I can get up from the floor by pulling up on something but don't need my hubby to lug me up.

My symptoms are still there. My feet are numb. My vision is blurry. I have a bit of spasticity. But I think I am doing okay.

I am on SSDI and Medicare (thank goodness). The fight for that was really rough on me. I went down hill fast during that ordeal.

I need to remember to do my exercises and relax. I also need to find a positive hobby to get excited about.

My trip from RRMS dx to SPMS was quick. In hind site, we think I have had MS over 35 years but I have only been diagnosed for 5 years.

I would love to hear everyone's story.

Hello
I'm new here but wanted to respond to you. I am Chronic Progressive (otherwise known as SPMS). I am looking foward to a new round pf PT this year. I am currently doing Peggy Cappy's "Yoga for the Rest of Us" tape #1 everyday and yes it's helping. I think that the PT in addition to the daily yoga will eventually allow me to walk with confidence at least 50ft and return without touching anything---that's my goal. I would love to be able to get up without help--we'll see....Just hang in there. Follow your program.

[nkh18]

I've been SPMS for over 20 years. I use a walker now and a wheelchair for long distances. I didn't like the shots so quit them and am now trying LDN - not sure if it's helping. I'm retired on SSDI also. I do what I can each day and like you hope I will get better. When I'm feeling low I remind myself that it could be a lot worse. I also try to exercise or do stretching often which helps. Good Luck to you.

[fishead]

Don't forget about the PPMS/SPMS chat

Just wanted to remind everyone about the PPMS/SPMS chats on Tuesday and Wednesday afternoons. Please check the chat schedule for times. I host the Tuesday 1pm chat as FishOP and MAKOP hosts the Wednesday afternoon chat. We are both freindly people, so come join us!!!

[Seasha]

Thanks all for sharing your stories. Keep them coming! Guess we have collectively tried them all (DMD's) from what I hear and most of us have lived with MS for quite some time.

Well, I'm seriously thinking of going off Copaxone! Isn't this designed more for RRMS? In fact, I don't want to take any more drugs. I'm home now on SSDI, my life is more stress free, I'm taking an excellent combination of supplements and eat mostly organic foods. I haven't gotten any worse sx-wise and seem to be on a holding pattern with life in general slowing down - no more rushing! and that's a good thing.

I am trying to rationialize going off the drugs. Some may say, I'm playing roulette, my neuro says stay on them and I'm confused .... What do you think? Will sx continue to get worse if I go off or does any body know for sure? I guess the fear thing is always there in the back of my mind.

jazzgirl, you mentioned you were off any DMD's - is that correct? Are you doing well?

Warm wishes to all!

p.s. I am 60 yo.

[chocoholic]

SPMS

Wow! Was beginning to think that I was the only one who had SPMS! I can totally relate to your post. Within a yr. of being diagnosed I went from a cane, walker for short distances only, otherwise a walker, loss of independence, loss of ability to go up/down stairs, work, drive, having to rely on others........totally losing who I once was! Balance is horrible, many falls! Spasticity is a huge problem for me, I've had an intrathecal baclofen pump implanted about 1-1/2 yrs. ago, and have since had morphine added to my pump, as I get much pain from spasticity. I hate not being able to work, and having to depend on others...that's a biggie for me! Attitude is 99.5% of everything. So, being positive is a must...I think everything happens for a reason. I am also on prozac and wellbutrin (antidepressants). I also take copaxone injections daily, don't know why...afraid to take the chance of symptoms worsening if I stop, even though I don't know if it's working. Not much for those with SPMS. I also take vitamin D, B-12 injections, amantadine, and tanzadine at bedtime (muscle relaxant) to help lessen pain of spasticity, so I can get to sleep. I think there really isn't anything out there for SPMS, mostly RRMS. So, it's nice to connect with others, who know what you're going thru.

[agate]

Hi Seasha,
I'm 69 and have had SPMS since 1978-1980. I'd say I've been getting worse in the last few months in spite of Copaxone (since 6/07).

I'm hoping that the worsening is just temporary. Usually I can do what I want when I want to, but I moved to another state in October, and I've had to do a lot of things in the last few months when I had to dance to somebody else's tune (be ready for movers by a certain day and a certain time, be ready to go to appointments with new doctors and housing people, be ready for a van to come and pick me up, and on and on).

Then my cat was pretty sick, and that was another case of having to do things I might not have opted to do just then like get up in the middle of the night, get the cat to the vet, and that kind of thing.

This type of pressure wears me down really fast. If I don't get enough rest or eat right, I have problems.

So it's been worsening spasticity, less ability to walk, less mobility in general, plus persistent skin problems.
Back pain enters the picture too.

But if I wait it out, these episodes pass in a few months, gradually. I'm hoping that's what will happen this time.

Meanwhile, I had an MRI in late December, and depending on the results, the new neuro might want me to stop taking Copaxone (and I assume take nothing).

That would be OK with me. If he seems like a competent neuro, I'll probably go along with whatever he recommends so long.

[Seasha]

Just wanted to remind everyone about the PPMS/SPMS chats on Tuesday and Wednesday afternoons. Please check the chat schedule for times. I host the Tuesday 1pm chat as FishOP and MAKOP hosts the Wednesday afternoon chat. We are both freindly people, so come join us!!!

Thanks for the info, Fishead! I'd love to join a chat but don't really know how to go about it. Also, I have a slow internet connection and wonder if that will cause a problem??

[Seasha]

Attitude is 99.5% of everything. So, being positive is a must...I think everything happens for a reason.

Hi chocoholic - I appreciate your positude attitude. Here's a quote I got from my yoga class : "An attitude with gratitude is like a prayer in action" I posted this somewhere else, but can't remember where. Something to think about, right?

p.s. I'm a chocoholic too

[bnw87]

Hi Seasha,

I am also SPMS, for about 8 years now and use a w/c full-time. Spasticity is my worst problem. I attend a support group (mostly RRMS) and while I'm fidgeting in my chair due to numbness, burning, and tingling, and tightness from spasticity, no one else seems to be! I think, am I the only one?

So, I'm glad you started this thread cause it's kind of lonely sometimes.

[Susan14]

S/P MS too....

Hi, I'm Suzy, I come here usually late at night cuz I don't like going to bed.