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Primary /Secondary Progressive MS For those living with Progressive MS to discuss treatment options and lifestyle issues.

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  #1  
Old 02-18-2012, 07:11 PM
Thinkimjob Thinkimjob is online now
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How long do you think dmds worked for you?

Now, please stop reading if you are new to the game.

I'm sure dmds do what it says on the box, and it seems to be mainly about reducing the number of flares, not slowing progression.

When I was first diagnosed, the neurologist said based on my initial symptoms (sensory not motor), I could expect 10 'good' years.

This was 13 years ago, when Copaxone had just come out.

She wasn't necessarily basing that forecast on whether I took dmds or not.

I took beta from day one, then Copaxone.

She was absolutely right. Ten good years, a few sensory flares and that was all, and then bang.

Three nasty flares, and not much recovery.

Walking without thinking about every step in detail? What was that like?

I can't even remember.

I feel like I'm in a permanent flare, but maybe this is the way things are when you've had MS for a long time.

I'm wondering whether this is par for the course. Maybe this is just progression.

In which case, I'd rather have stopped the progression than 30% of those nice little sensory flares in the early days.
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  #2  
Old 02-18-2012, 10:56 PM
pjsSissy70
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Im not sure how much this will pertain to what you were saying, but, I have had MS for 20yrs now. I was lucky. I was 22 when I was dx, and for the past 20yrs I have had flares that were so mild, I pretty much missed when they happend.

This past October I had a HUGE flare and another HUGE flare in December. I did 4 weeks of steroids, and I have lost my legs in the process. I am using a walker and I cant drive anymore. I count my blessings. 20 yrs of basically nothing. I was able to raise my kids and work f/t and remarry, without limitations. Ok, now I just lost my train of thought... lol... memory problems... ugh!! .. sorry
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  #3  
Old 02-19-2012, 12:02 AM
Thinkimjob Thinkimjob is online now
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I think that was what I meant to ask, anyway.

You say you got 20 good years - was that with or without dmds?

You and I are about the same age, so maybe it's turn 40 and it all starts to go bad.
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  #4  
Old 02-19-2012, 08:38 AM
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jbell2435 jbell2435 is offline
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interesting question

I am almost 53, dx a few months ago, but neuro thinks I've had it since 2004, almost 8 years...didn't have much of a problem until 2010 when I got the foot drop and r leg started to go weak.

Just started DMD a month ago and hope to prolong any new flares, which I understand cause the damage and leave (or take) a little something each time...

I wonder if it matters at what age you get it?
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Ampyra 10mg 2xday
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  #5  
Old 02-19-2012, 01:57 PM
AnneLouise AnneLouise is online now
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My parents told me how as a baby, I was allergic to everything but goat's milk and carrots.

As a teenager, my left knee would occasionally go out on me.

I remember at around 22, my upper leg was tingly. Mom said it was probably a pinched nerve. It lasted about two weeks.

Around 25, I woke with the left side of my face numb. Doc said was a sinus infection. I knew it wasn't. I went to a chiro because I thought it was pinched nerve.

Next, every time I looked down, I would get a "shock" down my neck and spine. I told the chiro, who never heard of anything like that. Believing it was the nerve, I continued the treatments. Maybe a month or so, everything was gone. Numbness, shock, everything.

For the next, oh, 17 years, nothing. I thought I was as healthy as a horse. I walked a mile every day. I loved to go dancing. Loved my garden. Raised a daughter. Married an awesome man. Began practicing yoga, which I loved, too.

At 42, numbness in my leg again. Oh, pinched nerve. Went chiro, but would not go away. Only got worse. My walking was slower. I went from dr to dr, as other symptoms appeared, like vertigo, stiffness in my neck or inability to keep my balance.

An ENT dr ordered the mri that sent me to the neuro, who knew right away. I had gallons of blood taken. An echocardiogram, a vep, another mri, countless physical exams, and, of course, the lovely lumbar puncture.

I started copaxone in 2009, but I just keep getting a little more worse than the year before. Maybe it is slowing it down. Maybe not. I don't know.

What I do know is that this is ms. An incurable, progressive, disease. This is the progression of ms. It could be quick and aggressive or lazy, passive. I guess if you catch it early enough, the dmds help. But I didn't know there was anything like this. I never heard of ms. Well, until it was in my face!
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  #6  
Old 02-20-2012, 10:56 AM
tommylee tommylee is offline
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Dx in 98', started Avonex but seemed to rapidly decline for another two years.
Retired from career in 2000' and started to take real good care of myself. (diet/exercise)

I still feel like I have a hangover 24/7, but I can still function for a few solid hours a day . (most days)

Dumped Avonex a little over a year ago.
It has been nice to be free from all the side effects.
So far I seem to feel better without it.
(time will tell?)

Working on 14 years Dx. Avonex from 98'-2010'.
Accept for a few Herbs nothing for the past year+.... and still getting around alright. (47 years old.)

I seem to feel like I aged very rapidly. (if that makes any sense?) Like I am stuck in some old geezers body.
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  #7  
Old 02-20-2012, 01:16 PM
AnneLouise AnneLouise is online now
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Tommylee, I know what you mean!

About being trapped in an old geezer's body! I'm 48, but I feel (and sometimes move) like I'm 84! My grandmother is 99 and writes about how she feels and how hard it is to get around.
I know exactly what she's talking about!
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  #8  
Old 02-23-2012, 11:01 AM
msbluis msbluis is offline
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DMD effectiveness


I haven't posted here in some time, but here's my experience with the early CRABs.

I was dx'd in 1995, 17 years ago, with Primary Progressive. My actual "disabilities" (beyond the annoying L'hermittes, some numbness and increasing bladder issues) didn't become more bothersome until 1998. That's when we moved and I quit work.

I went on SSDI about two years later. I've got helpful info for those who are thinking of applying now or even if it might be a possible issue in your future. It might help you receive approval on your first try.

My neuro at that time, 1998, put me on Copaxone. He admitted he had no PP patients, and all we could do is try what was available. There was nothing for PP then, just as there is nothing for it now to slow or stop the progression.

I continued to progress at .5 on the Kurtzke EDSS every six months. I requested a change to Betaseron. I remained on it for almost 8 years, still progressing .5 EDSS every six months, so I stopped it, personally tired of its ineffectiveness for me.

I also was the first one in my neuro's office to try Novantrone (methotrexate), a new wonder drug being used somewhat successfully for RR and SP MS. It wasn't meant for, or shown to benefit, PPMS patients either, but I still did 3, every-three-month infusions.

There were no benefits to me while on it; all I did was lose 1/3 of my hair while I continued to progress at the same rate and continued adding on disabilities. (The hair grew back! Yay!)

After stopping all DMD's, my progression continued to advance. No more, no less. Which brings me to this day. I'm between 8.25 and 8.50 on the Kurtzke scale.

I am quadriplegic, in a Permobil chair, haven't walked even with aids since 2005 and I haven't driven since 2003. Man I miss driving - maybe even more than walking.

The only MS-related med I take is Effexor ER, an antidepressant. In 2010 I got a suprapublic catheter after having self-cathed for 7 years prior to it.

My health aid or hubby must dress, bathe, toilet and transfer me by way of my patient lift. I can't stand to transfer.

If anyone has any questions about progression, assistive devices such as AFO's, canes, walkers, rolators, manual chairs, scooters, basic power chairs or advanced power chairs, maybe I could help.

I'm not going to tell anyone that you could, would, or even might advance as I have. Everyone's MS truly is different. But if you want info as to what I've experienced, feel free to respond here or private message me. I promise, you won't get a depressing response, only experience and knowledge.

Knowledge is power - - really!

Karen
MSBluis
(short for Ms Blue Eyes)
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  #9  
Old 02-23-2012, 11:20 AM
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Sequoia Sequoia is offline
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Welcome back, [B]msbluis[/B]!

Thank you for your generous offer to help other members. It's much appreciated.

I just need to tell you that MSWorld no longer has a Private Message option. If you're comfortable with putting your email address in your Profile, members can contact you that way.

Alternatively, maybe you'd like to start a thread of your own? (Just a suggestion.)
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  #10  
Old 02-24-2012, 07:38 AM
Nanobaby Nanobaby is offline
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Quote:
Originally Posted by jbell2435 View Post
I am almost 53, dx a few months ago, but neuro thinks I've had it since 2004, almost 8 years...didn't have much of a problem until 2010 when I got the foot drop and r leg started to go weak.

Just started DMD a month ago and hope to prolong any new flares, which I understand cause the damage and leave (or take) a little something each time...

I wonder if it matters at what age you get it?
The age at diagnosis is associated with disease prognosis generally the older a person is (over the age of 50 years - this is also known as LOMS - Late Onset MS) the disease course tends to be PPMS. (Martinelli et al., 2004).
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  #11  
Old 02-24-2012, 09:53 AM
Grace53a Grace53a is offline
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Hi Karen,

A question. Did you take Novantrone (Mitoxantrone) and Methotrexate concurrently? I have MS friends who have used both, though not at the same time.


Grace
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  #12  
Old 03-21-2012, 11:57 AM
STEVEP STEVEP is offline
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Novantrone

I was dxd in 1986. I did not see many real symptoms until about 1995 - this was while not on any drugs. At that point, I started a downward spiral. About 1998 I tried Copaxone for as couple of years, but still continued to decline. In about 2000 I did the Novantrone routine until I could no longer take it due to damage to my heart from the drug - abouit 24 months of treatment. It seemed to have stopped the MS in its tracks (knock on wood). I did one treatment of Tysabri before it was pulled from the market.

At my last neuro visit, I asked her if it was the Novantrone that stopped the fast progression. She said she did not know, sometimes the disease just burns itself out.

While all of this was going on, I got to the point where I can only walk with a walker for short distances (under 50 yards).

I apologize that I do not know exact years. The exact years really have no meaning to me so I have tended to just throw them in with the other things in my bag of "It Happens" and have moved on.

I do not know why Novantrone really is not promoted more by Neuros. I would take all of the risks again if I knew it would stop the progression. I feel that it did stop the progression.
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  #13  
Old 03-23-2012, 04:45 AM
sich59 sich59 is offline
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Copaxone and Betaseron never helped me at all. I wasn't on methotrexate long enough to tell (elevated liver enzymes ensured that).

Apmyra and LDN are two that do help a little, in addition to the more heavy duty stuff I'm taking
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  #14  
Old 03-23-2012, 06:45 PM
golczy golczy is offline
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I was diagnosed in 1978 before MRI's before DMD's. Neuro figures I've had it at least 4 years before DX. Had a child, that went fine, minor problems that a dose of Prednisone would take care of. lead a very happy, productive life doing whatever I wanted. I had started on AVONEX in 2000, then to BETA, tried COPAXONE, Solu-Medrol therapy then went off the drugs completely.
By 2006 my walking was getting more difficult and since I didn't trust my legs I gave up driving. I have had Stem Cell Treatment twice and received repair of my bladder, (a big plus) fatigue gone, hearing better along with better breathing. I'm stronger but do have to use a wheelchair now. I believe if I wouldn't have listened to my neuro and given up exercising I would not be in the chair. I can stand and I can walk with a cane or hanging on to a hand but not real far and I look weird. I have drop foot so dragging the leg tires me out. I don't believe the drugs did me any good rather they did harm.

I am now 55 years old, so I have to be thankful for all the good years but I sure wish I could have had more!
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