I'll try that!!!

That is how I have my foam pad.

It also helps to use a good mattress pad. Worth a try and besides, a good mattress pad is worth the extra money. After all, it is something used EVERY night.

And Kicker, even you are worth it.:rolleyes::D:D

Question for the PPMSers. How much did you go through before the official PPMS dx?

I ask, as I am stuck in limbo land. sx started in aug of 2007... been in continual "flare" since with a 3 month reprieve, where the majority of sx (but not all) went away. MRI proved that copaxone actually made it worse. Horrible reactions to Avonex, now have 3 TY infusions under my belt. 14 MRIs since oct of 07 and every single one of them has progressing/ new lesions. Doc says I am no longer considered to have a remitting form of MS. And it is progressing faster than she has ever seen... yada yada...

BUT, she will not give me an official PPMS dx, nor an SPMS dx.... so I feel stuck somewhere in the land of the lost here. I get that a PPMS dx would pretty much kill any hopes with my insurance co, but not knowing is just as annoying. SO my question is, when do they call it??

Wow, Legzz, I'm so sorry you seem to be heading that way. Your Doc already gave you the hint, when he said that you weren't RR anymore. :eek:

Your Doc probably is holding back on the PP DX, so you can still fill yer gut with TY or some other DMD. JMO, but I think you're wasting time and money on MS Meds, that are only for RR (especially Tysabri):confused:

((((((((Legzz))))))))

This discussion of mattresses has been really helpful. I had thought of trying a Temperpedic, but after learning that it's difficult to get out of and turn over, plus the heat issue, I'll save some money and maybe try a topper with a good mattress pad instead. Like you Kicker, I have a hard mattress that I used to love, but now it kills my back and other pressure points. And yes, I have trouble getting in and out with nobody around to help. That's why I sleep in my lift-recliner.

The problem with the lift type recliner is that it has a pretty hard seat. Suppose with all the "workings" inside, there isn't as much room for padding as in others.

leggz: I'm sorry your flare hasn't let up. As Sally said, your doctor probably has his opinion, but hates to label you just yet for insurance purposes. Hang in there!

A new question for anyone who knows!!! Being I have the incontinence problem now -- don't realize I have to "go" until it's too late -- I have resorted to the latest in underwear fashion, Depend. However, I easily develop sores on the tops of my legs where the elastic goes. The main problem is when sleeping, sooooo.......has anyone heard of or had any experience with an implanted urinary catheter?

Besides my legs not working at all anymore, this problem really keeps me housebound. Just trying to find something that will allow me to be "out and about" a little.

Mrs. D -- Love your avatar! My ex and I lived in Oswego, NY for a year when first married and we sure saw alot of that white stuff .... 103" in three days!! :)

IF your incontinence is isn't terrible, I like Poise pads. They go in regular underwear with an adhesive strip like a menstrual pad, if self toileting, change without having to remove underwear, come in variety of sizes and may be cheaper. Not sure at night because of laying down, you may have leaks and will need Depends. There's others stuff out there like Poise too.

I have not yet become incontinent, but I do leak sometimes before making it to the toilet.

Thanks for the idea of the poise pads. :)

orrrrrrrrrr, you could just sit on a doggy potty pad. :p :D :cool:

Thanks for the suggestion Kicker. Maybe I'll give them a try in the daytime. At night I don't think they would be enough. And Sally, don't laugh, a couple times when I didn't have anything else to use, those puppy piddle pads came in handy. Have to improvise sometimes!!! :)

Judy-
When I could walk (but not very fast), like my neighbor told me she sometimes did (NI with a brain tumor - older, both her and her DH gone now) used our very private backyards to piddle in. I liked her and her forthright honesty.

She didn't tell the other neighbors. Just me. We sort of belonged to same club.

How on earth do you know if it is SPMS, when the neuro can't even tell you, I've been on LDN for 5 years now and I don't have anymore attacks, but I think I have progressed somewhat, I have never fully recovered from the first attack, which left me with partial paralysis, 15 years ago. It's so hard to tell about this disease.

Kicker --
"Back in the day", I probably would have thought that's just not right, the elderly couple, but now I'd be a member of the club! Funny how circumstances change your whole outlook on things. Always thought it was totally unfair with men having such an advantage in that department. I never could quite master the "art" when camping, hiking, whatever, and always ended up with some wet clothing!! lol! :)

Judy,
My Dad was always saying "back in the day." Now he's gone over 8 years and I'M saying it to my kids. Circle of life and all that I guess.

Judy----> LOL. My DH2B laughs at me when we go camping because I always bring a cup for that very purpose! It's so much easier!

kicker: Isn't it amazing how we turn into our parents??? Sometimes I catch myself saying something that sounds very familiar. I love it too, when my adult kids say things to their kids that I said to them. My oldest, Lori, once said "I've turned into my mother!"

I love that type of thing that shows the continuity of life. Still haven't found out who started this MS!! Bah humbug!!! :)

leggz: That's a great suggestion!! I never even thought about using a cup! DUH!!!! Guess I was always too busy looking for poison ivy and that good stuff!! lol! I'll have to pass it on to my daughter since they camp and go fishing alot in remote places. :)

Time Management
 

Where does it go?

I used to be able to get ready, clothes and minimum make-up in about 20 minutes or even less if I needed to get out the door.

Now, an hour is necessary. Making the bed or washing clothes are a day's event. I set a timer for being on the computer because it is distracting but it is the ability to multitask that has disappeared.

I have e-mails from long ago, never got written.

Time is elusive. I move slow, I think slower.

I hear you, Cyn. The difference is, I like it that way. No hurry hurry, anymore!! :D

Of course, you youngsters still have fish to fry and oats to sow. :p

Feel better soon..:hug:

You know those little gnomes that sneak into your house in the middle of the night to steal your socks? The ones that leave the match behind just to prove they were there?

I think they have been sneaking into my house during the day stealing my minutes too! :eek:I think it is part of their gang initiation process for the new gnomes.

When I woke up at 3 am this morning, I decided to see if I could catch them in the ac...but they are just too sneaky! I decided to check my email, and wouldn't you know those little guys snuck in here undetected and stole a whole hour!?!?:ranting:

Gee legzzzzz......I wonder if they're a branch of the roaming gnomes? They spend time around here too. It takes forever to do the simplest things, like getting dressed. By the time that's done, dog taken care of and food made, a couple hours have gone by and I'm exhausted! :) Where does the time go?

I'm turning into The HULK!
 

So the broken back leaving me immobile has lit a new fire to spend more time at the gym. I go to phys therapy 2 days a week and now at least 2 nights a week I go to the gym. PT is mostly core and back stabilization and the gym I use to try to build and maintain muscles in my legs and arms.

Which is sometimes hard to do due to the whole fatigue thing. But I find myself easily motivated to hit the gym because every time I think about how I am tired and don't wanna go the PPSM statistics pop into my head. I try to be optimistic with this disease but it doesn't change the fact that I am going to do everything within my power to stay as mobile as possible.

So my arms have gained half an inch and my thighs have gotten smaller while my calves are growing. On the plus side I have lost 8 pounds.

Just wish I had the balance to get on the treadmill. This is my new goal.

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........ :)

Me too, Judy. I wasn't a runner, but I danced a lot. I'd love to jitterbug or dirty dancing, one more time.:)

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.

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. :mad:

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..:rolleyes:

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 ****.

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.

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.......:)

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.

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

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. :hug:

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!! :)

Difficult decision
 

Having MS means I have to make difficult decisions. I have to be willing to know my body and what I cannot do.

This is supposed to be my busy time. Kinda like xmas for the vast majority here. I make breads, tons of them during this time. So much that I bought an extra freezer and had an electrician safely wire it in my garage.

The whole process is complicated and I have taken great pride in pulling off what seems to be an impossible feat.

There has always been a great satisfaction in this crazy time.

But I just sent out an e-mail telling "my people" that I cannot fill their orders. I have never met some of these people so it may even be the first time they learn of my MS.

I know I have to pay attention to my body and try not to give in to a pity party but writing the e-mail and pressing the "send" button is just a little more of me that disappeared today.

Awwww Cyn....darn it...:hug::hug:

Welcome to PPMS.... blah!!
 

So i still have 4 broken bones in my back. Solution? Morphine pills. 3x a day. Still have Bursitis in my hip and a torn hip flexor so i started PT, which is a waste of time. 20 minutes of strecthing, 15 minute massage, and 15 minute ultrasound massage. Feels good (aside formt he 20 minutes of torture) but my hip still hurts. Let's see, what else?

Oh yeah, Zombie thyroid has come back to life 6 yrs after we killed it and it is over active again (probably a good thing since morphone causes munchies). Solution: We are going to monitor it.

I have this stupid MS thing; solution: NONE. But we are still doing Ty infusions once a month. Now for the fun part.... the Spine doc wants to do monthly epidural stertoids into my spine. BUT, neuro says we have to have a 2 week window from the ty infusion.... so 2 weeks before infusion we can do injection, then 2 weeks after infusion we can do injection.... only problem of course is that there are only 4 weeks in a month. which leaves a 2-3 day window I can get infusion. And we have to schedule all of this around 3 days a week PT, 1 day a week physchological councelling, monthly follow up with PCP. monthly follow up with ortho, let's not forget weekends and holidays, plus foolow ups with all of my other "specialists".

There are not enough days in a week!

My neurologist has actually gotten nicer as he realizes there's not a dang thing he can do for me and my PPMS. We no longer play the get a MRI game, both asking "why." Last time I saw him he said see you in a year unless you need me. We no longer do the every 6 months game. He never takes longer than 12 hours to answer my e-mails, is open to providing me with WC prescription, pain medications, letters for house delivery of mail (My mailbox is 800 feet away down a hilly drive.) He does not say it, but we both know there is nothing he can do but treat problems if they arise. Rebif, Novantrone, generic/compounded fampridine have been tried with no success. Last time I saw him I said it must get hard treating MS people (he is a MS Specialist Neurologist), no one gets better". He cough/laughed and didn't say anything. No PT for me, My job is to use my time well NOW.

Hi Leggs, good to hear from you.:)

I am so sorry for all your troubles....I hope you get all your ducks in a row, soon, without too much QuAcKiNg...:hug::hug:

It's nice that you have a good rapport with your DOC. Too bad he doesn't have all the answers.

Keep it moving, Dear:)..:hug:

PRMS... and can't find anyone else with it. Is it ok if I join this thread???:confused:

Yep, you fit right in with us oddballs..:D

Thanks Sally. :) It feels great to be welcomed. You all are so wonderful here.

hi noidy! welcome to crazy town...population....us!