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Unread 04-29-2010, 12:25 AM   #61
Judy2
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YOU GO GIRL!!!!! Yay leggzzs!! Keep on moving as long as you can. It's really the pitts not to be able to move the legs no matter how hard you try and tell them to. And it's much better turning into the HULK with muscles than just plain fat from sitting all the time! I HATE THIS DISEASE!!! Oh for the days when I ran three miles a day.....sigh.

5, 4, 3, 2, 1........
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Unread 04-29-2010, 10:44 AM   #62
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Me too, Judy. I wasn't a runner, but I danced a lot. I'd love to jitterbug or dirty dancing, one more time.
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Unread 05-19-2010, 04:00 PM   #63
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I'm curious about how many with SPMS are or have been on Copaxone (or any of the other DMDs).

I've been on Copaxone nearly 3 years now, and before that I was on Avonex for 3 years. I'm going off Copaxone. It was causing too many problems for me.

I have never been able to find any evidence that Copaxone does much for people with progressive types of MS. And I've been on the lookout.

Oh, and I have 53 like-new Copaxone syringes but I know it's illegal to give them away. I'm just mentioning that I have them. If anyone wants to PM me about them, I'll reply.
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Unread 05-22-2010, 11:01 AM   #64
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I was on Avonex and then Cpaxone for about 10 months. I stopped Avonex because of the side effects...I stopped Copaxone because it just wasn't working.

As soon as I went to SPMS, I stopped all poisons.

That's the thing that hurts me the most about being SPMS, there are no healing meds being produced that fills our need.

LDN helps me a lot and I love it, but it isn't a cure and will not make my MS go away. None of the DMDs are going to make it go away either, but, at least I feel better with raised endorphines. I was sick constantly while on the CRABs..

It's much easier to find a med for RRMS, since it is, in the early days, self healing, so they can say...AHA, it's working..

If the DMDs do their job and stop your MS from progressing to SPMS, then and only then will any of them be worth a ****.
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Unread 05-22-2010, 12:15 PM   #65
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Sally, I've had SPMS since I was diagnosed, back in 1980, except that back then I don't think they had classified MS--you had MS or you didn't.

I took Avonex for 3 years anyway, and now I've taken Copaxone for almost 3 years. What I don't get is why the two neuros thought it was advisable for me to be on one of the ABCRs.

I have two possible answers:

1 - Neither of them was aware that I had SPMS. This is possible because neither of them ever got into the topic.

2 - They both believe that everyone with MS--no matter what type of MS--ought to be on one of these drugs. I still don't get why they didn't say, "The evidence isn't there to show that this ABCR drug will help someone who's had MS as long as you have, someone your age, or someone with SPMS, but go ahead anyway if you'd like to give it a try."

They apparently believe wholeheartedly in these drugs, and if they don't, there's also the fact that the ABCR drugs are pretty much all they have to offer, after so many decades of being able to offer nothing at all except steroids.

I can imagine that a neuro might be reluctant to tell someone like me (older, SPMS for more than 20 years), "I'd like to suggest one of the ABCR drugs but they're not shown to work for people like yourself, and so I won't do that."

In other words, they don't want to turn us away, offering us nothing but a lifetime with MS.

I've often heard that neuros are very frustrated by a disease like MS because they've been trained, as doctors, to want to help people. When they can't do anything to help, they get angry.

This may even account for some of the dismissive attitudes some neuros have, which I've seen discussed on this board often enough.

So I don't blame either neuro for offering me useless drugs. I'm glad I was given a chance to try them--on the offchance that they might have helped.

You were smarter, Sally. You've saved yourself a lot of time and effort. Sure, doing a shot a day is a piece of cake once you learn a routine for it, but 15 minutes a day comes out to over 2 hours a week.

I can do a lot with 2 hours a week. If someone says the shot can be done in less than 15 minutes, I'm factoring in the time spent arranging for and waiting for the Copaxone deliveries, getting on the phone about insurance coverage, and unwrapping the package and storing and keeping track of the syringes and other supplies (cotton balls, Benadryl, gelpacks). It all adds up.

I'm really enjoying all of the freedom I suddenly have.
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Unread 05-23-2010, 01:24 AM   #66
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I think you're "right on" about our neuro's wanting to offer us something -- even though they know it probably won't work. Those drugs did nothing for me except to produce horrible side effects where I thought I was going to die! Tried Betaseron for awhile and then Avonex. While on Avonex, I was diagnosed with fibromyalgia. Wonderful.....NOT!!

Then there were the three Novantrone infusions. Talk about creepy as the bright blue fluid is rushing into the body. That caused the same side effects as the interferons.

The LDN really seems to be slowing down the progression. Like Sally said, it isn't a cure, but if it helps just a little, it's worth it to me until the REAL cure comes along.

Along with your extra time, agate, your body is probably enjoying the vacation from all those "sticks". Take care.......
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Unread 05-23-2010, 09:40 AM   #67
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You're right. It's been only a week without Copaxone but my arms are looking a little less lumpy, and my intestines are calming down a bit.
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Unread 07-25-2010, 07:25 PM   #68
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Default Need some help!

My father was diagnosed in 1987 with PPMS and has not gotten to the point where he is unable to move both legs and arms. He is bed ridden. However, my family and I prepared for this eventually happening a long time ago. We were not prepared for finding out about the lesions in his brain. Some days he wakes up and does not know who he is or who my mom is, other times he wakes up happy but is confused. Other times he wakes up and all he can say is "help me! Please." We ask what can we help with or say okay. He responds with okay, and then he goes back to :help me! Help me now!" He continues this for about 48 hours plus. I am asking if anyone knows about anything to help him sleep. When he finally falls asleep, he comes back to us and stops screaming, "Help Me!" He cannot take anything that will suppress his respiratory system. But is there anything natural or medication-wise that has helped you or loved ones/friends before?

kay
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Unread 07-25-2010, 08:12 PM   #69
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I am so sorry to hear about you Father's condition. It must be extremely stressful for you and Family.

Has your Father tried melatonin? Some people find that helpful in regulating your sleep pattern.

I will be praying for your Papa and for you too.
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Unread 08-04-2010, 02:54 AM   #70
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Kay -- How is your father doing? We haven't heard anything from you since your first post. I do hope his mental state has improved at least somewhat.

A couple questions, if you don't mind. Remember, I'm NOT a doctor, just a person with spms and have been diagnosed since 1990 with symptoms 14 years before that.

l. If your father is able to use his arms and legs, why is he bedridden? My legs no longer work properly so my days are spent in a powerchair. I am able to pull myself up while hanging onto something for dear life and also transfer for toileting and into my recliner. I'm praying the LDN will keep things status quo for the rest of my life!

2. Have you gotten a definitive diagnosis of MS? Personally, I've never heard of it manifesting itself in that manner. It sounds more like my former mother-in-law when she was in the earlier stages of Altzheimer's. Just curious.

Join in if you get a chance!!
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