I’m not so much into the Ampyra. Tried it for over 5 mos and sometimes it seemed as if my legs were weaker. Now this does not mean it will not work for all, just not so much for me. I had high expectations, but srsly, it is more for the less severe forms then the progressive forms. Might be only my opinion, but whatever. I know my MS and it knows me.
just say no
I really wanted it to help, but oh well whatcha gonna do. Keep waiting for them to finally get a useful medication for the serious progressive forms. I think that finding help for us would really help the less progressive forms.
So I wait, and pray that they find something for PPMS before I get so bad nothing will help.
On that not, off to watch ‘White Girls’ and omg they crack me up. Love the Wayans!!
After being off the Ampyra for 2 weeks thanks to the prescription insurance buffoons, I finally got back on. The weird thing is I felt better being off of it than being back on it. I actually had more leg strength when off it then i do now. hmmmmm Makes me think may not be the right medication for MY PPMS! If I do not notice any real differences in the next couple of months, I’m done!!
Now the prescription ins people, CVS Caremark, are denying me a medication they approved for me for the past two years. WTF, Really!! So now i get the fun task of calling them and letting them have it! Greedy bastards!!
I added some new things to my sale items sections, and all kinds of new glass pendant necklaces, my newest love, to the shop. I am finding that when I am at my design table and making new pieces, it helps keep away those depression gremlins.
Keep an eye out for more ‘fun’ discount codes as December arrives. You’ll be able to save up to 20%.
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If I’m not back by Thursday, Happy Thanksgiving, to all who celebrate.
Will start with the Ampyra saga. I’ve been on it now for 3 months. Do I notice any improvement? I want to say, “YES YES I do”, but it’s not that simple. I do feel that transferring and rising up and down has seemed easier, sometimes. But, then I wonder, was it the same before the Ampyra? I’m sorry but most [99%] of the MS medications are for RRMS and not the progressive forms. They say this is for all types, but I do not buy it. You would think they would WANT to find something for the more serious forms as then the less serious form might be ‘cured’.
Well, it’s kind of a mute point now anyways as a clusterfuck occurred between the insurance and the neuro’s nurse and the neuro. Due to the type of drug this is they [ins] wanted to know the progress after 3 months before refilling my scrip. You would think that would be easy peasy… ummmm nope!! My neuro’s nurse [new] is one not the brightest stars in the sky when it comes to dealing with this. I think she mis-informed my doctor and he canceled the scrip.
can't anything be easy?
She told me to call back Friday night after she spoke with my doctor. Fuck that… she can wait until Monday and this time she better have the right answers. I’m still waiting for a referral from 2 weeks ago she has not done. I’m a pretty patient person [hence my bathroom] but DO NOT push me too far. You will not like it. So we shall see what happens tomorrow.
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I am finally back to doing my jewelry, MzTracyr Designs . I hope the good feelings last as they can go away as quickly as they come. It was really cool being at my design table creating again. It’s been like 3 or 4 months [maybe longer] since I have made anything. Drop on in and take a look if you can.
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Now on to a funny/not funny situation. My wheel-chariot does not seem to want to hold a charge. So, Roger took it apart and tested the batteries the cables and all are fine. I’m wondering if the controller’s wire is messed up since I do run into walls from time to time. lol I’ll be calling them tomorrow. Oh JOY! Now the funny, omg, duh moment… I’m 6′ tall and wheel-chariots are not made for tall people. This one seemed the best so we got it. Well, when Roger took it apart we found that we can raise the seat almost 6 inches! We were busting up laughing and how stoopid we are. I have had the chair since February 2009 and we had no clue. We are not big ‘manual’ readers. lol It is so cool to be higher. I was in heaven today. He raised it so the back is a tad lower than the front and it is amazing. So, now I got the best chair, and it may be having issues. This is so my life!!
That’s what I am!! lol The past few days I have felt accomplished. Each morning after the kids leave for school, I’m up and washing the dishes, tidying up, etc.. Some may say, “Big Deal, ooh you tidied up”! Well it is a big deal. Dishes take a lot out of me. Trying to reach up and over the sink to get all the plates, silverware, and glassware is tiring. It’s amazing how a dish can feel like a 20 pound weight. I have bruising on the upper back of my arms from the counter. But, to me it shows I’m moving and trying to do things. I’m slowly trying to de-clutter. It’s all about baby steps. After getting all the dishes done and things straightened, I’m ready for a nap. 😛 When I was well, my house was spit-spot. You could eat off the floors. Now, not so much. One of my OCD issues I have had to learn to deal with… slowly but surely.
I’ve been on the Ampyra for almost one month. I’d like to say I’m running marathons, but not yet. Ok, never ran them when I was well either! 😉 Do I notice anything different, better? I want to say that it seems easier to rise up from my chair to transfer, but I’m afraid if I do I’ll jinx it. I am going to get out my walker tonight when the hubby comes home and try to at least use it to get to and from the tinkletorium. Wish me luck!! I have not been able to use it since my Hell Hospital stay. That place fuckered me up. But, it would take a lot more than those fools to keep me down!!
This is NOT my life… where is my real life? If you find it, please reply here with the location.
I realized that I have not been out of my home for over 3 weeks. I just have no desire, no oomph to do anything. I know it’s not about the Ampyra as I’ve only been on that 2.5 weeks. It’s been so hot here and heat is no longer my friend. When I say out of my home, I mean that literally. I look outside, but have not even gone outside. I have no desire, or care much right now to do anything.
All my kids are back in school, hubby working, so I’m alone all day. I do not drive, can’t work, and sometimes I really feel like what’s the point. I have no energy, my fatigue is off the charts. [even with the anti-fatigue meds]
And please, please do NOT say, “It could be worse.” or “You’re only given what you can handle!” BULLSHIT! This is my ‘worse’. I need help to get dressed, to shower, sometimes to eat when I can barely hold the utensils. I wear my pj’s most days all day as by the time I get up everyone is gone, and it takes too much energy to get pants on by myself. Luckily, I love my pj’s and have many sets. I guess unless you ‘roll a mile in my chair’ you’ll never understand. The helplessness, the loneliness, the depression that sets in. Maybe it’s a ‘healthy’ thing. Usually it’s the healthy ones that makes the above statements. Their biggest issue is what to wear, having a busy day, what to cook for dinner, ‘oh damn’ have to drive the kids around, etc. etc. etc!! PLEASE!! I know this to be true as I was once there and took soooo much for granted. Like ….. walking for instance.
my legs...
I’m tired of always feeling like I have to be shiny happy all the time. My life SUCKS!!! I know, I know, I have a gr8 husband and kids and family and friends…I get that. But, I have no purpose. Without a purpose what’s left. Feeling useless is the most depressing feeling of all. I have not felt like nor have had the energy to make anything for my shop in weeks. My hands cannot hold the tools very well right now. SHIT, SHIT, SHIT!! Who really cares anyways.
It’s hard to know if it truly is working. I think I feel changes but then I wonder if it is real or imaginary. I can still move my toes around better, but then I wonder if it is better. It’s very hard to explain my emotions. I want it to work so bad that sometimes I think I am making it all up in my head. Sometimes it seems that it is easier to transfer, then the next time it’s a struggle. I’m still dealing with the insomnia but not sure it is from the Ampyra or the MS. It has been hard to sleep way before the Ampyra, but it seems worse now. I’m hoping it is a side effect that goes away as I do not want to have rely on sleeping aids.
Normally my left foot does a toe curl thing that I cannot control. It’s quite sexy! 😛 When it happens Roger will try and straighten out my foot. Bottom line, I cannot control the toes on my left foot or the foot for that matter. My right foot has more movement, but I cannot grip them on my own. I guess they call it toe clawing.
NOT my foot!
Well today Roger helped me shower in the kids bathroom again. When I finally got out he went to get me some jammies. Me being me and not waiting for him, got up and tried to get to the sink to rinse with my fav, Listerine. I started tipping over going down and all of a sudden my toes, on both feet, gripped the ground and balanced me!!! I am not sure if Ampyra also works with the feet, but for me this is a first. I was so excited and thinking it was a fluke, I made myself tip again and again gripped and balanced. So, here I sit gripping and un-gripping my toes all by myself.
Could be a start? I don’t know, but I’m taking it!
Took my Ampyra at my 7pm time. I actually went to sleep at 10pm which is early for me. At 12:30 am I’m up. Hubby is snoring as he did not put the Snore EX mouthpiece in. I can hear the girls in the front room watching tv and camping out. I’m becoming quite irritated at all sounds I am hearing. I keep rolling hubby over and asking him to put the mouthpiece in. I get a sleepy ‘ok’… and he rolls back over and snores. After about an hour of this I get a bit more ‘aggressive’. Put the fucking mouthpiece in or I am going to smack ya over the head. SUCCESS!! He finally gets it and all is quiet. I’m lying there, completely exhausted, but unable to find sleep.
2 am… pain in my calves. I am used to pain in my legs but nothing like this. It felt as if someone had my calves in a vice tightening it more and more.
Insert calf and tighten
It’s now 2:30 am and I’m deciding if I should pop a Norco or not. The problem with Norco is it kills my stomach if I do not sit up after taking it for at least a half an hour. So that’s out. I do not know when sleep finally came, but the next thing I know my cell alarm is going off at 7 am. Ampyra time! I then read about the side effects for the nth time:
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seizure (convulsions);
pain or burning when you urinate;
problems with balance; typical for me
numbness, burning pain, or tingly feeling; GREAT
relapse or worsening of MS symptoms;
Less serious Ampyra side effects may include:
headache, dizziness; have this
sleep problems (insomnia); DOH
nausea, constipation, upset stomach; umm hmm
weakness; uh MS doh
back pain; Degenerative disc disorder
stuffy nose, sinus pain, sore throat; coughing at night
mild skin itching. GREAT
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When I read this I have to laugh. MS already does most of this all by itself. So whose to know if it’s MS or the Ampyra. I know the leg pain is the Ampyra as I have never hurt so bad in my calves before. My dizziness has worsened, and my throat is bugging me more than normal. Above, in red, are what is happening. With most medications, side effects do lessen with time. *knock wood* So, I will remain on it for a few weeks hoping I can get used to it all and that it will lessen with time.
I started the Ampyra Friday night at 7pm. [July 23, 2010] I have heard it can give you a burst of energy, but for me not so much. On Friday I was tired, but tried staying up late. Why, I do not know. Maybe I was waiting to jump up and walk! lol By the time I went to bed, I had 4 hours of sleep. My cell alarm went off at 7am, got up, took the pill, and went back to sleep until 2 pm. Last night [Saturday] took it at 7pm, went to bed around 10:30pm, got up at 7 am, back to sleep until noon. The only real issue I feel is being more dizzy than normal. Shaddup! 😛
eeeeeeeeek!!
Most of the ‘basic’ side effects of Ampyra I already deal with thanks to the PPMS. So, it’s hard to distinguish between a side effect and my MS. Some people have stated they feel tingles in their legs. I feel things like that anyway, so it might not be all that noticeable to me. It will be different for everyone just like MS is, so I figure when something happens for me, I’ll know. 😉
I would love to hear from others with Primary Progressive MS that are trying the Ampyra. There are not that many studies for those with the chronic progressive form of the disease. Most medications are for RRMS [Relapsing-Remitting] so I’m sure the medication and it’s results will be different for people who are progressive.
So, tomorrow is the big day. 7 AM, my first dose of the Ampyra. To say I’m nervous would be an understatement. I’ll be making my flier today. [click here for explanation]
I’m the type of person that wants it like yesterday. So I will be learning some patience as no medications works instantly. But hey, it could happen!! lol I’m ready to disco baby! Ok, maybe not disco, but at least be able to transfer to the potty with ease! 😛
please, please!!
Hope everyone has a fabulous weekend!!
Blessings and Hope!!
UPDATE: I am going to start it tonight!! Wish me luck!!!
Making it Through the Rain 