medications · multiple sclerosis · Pain · Ramblings · RANDOM

Pain sucks!

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

    —————————————

    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.

    aarrrghhhhhhhh…

    Blessings and Hope!

health · medications · multiple sclerosis

Ampyra – day 2

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, not much new to tell you. I’ll be back!

Blessings and Hope!

health · hope · medications · multiple sclerosis

Anticipation…

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!!!

health · medications · multiple sclerosis · shower · sleep

The Ampyra Arrived!!

The Ampyra came this afternoon. I decided to start on Saturday when the hubby and adults are around just to be sure I do ok on it. Since they stressed to me that seizures can happen on this we are having a ‘what to do if mommy starts a shaking’ talk with the kids. 😉 I am making a small flier:

In case of seizure: Turn mommies head to the side, call 911, don’t panic mom will be ok. Tell the ambulance driver to take mommy to the new hospital or Lancaster Community. DO NOT take to Antelope Valley Hospital. This is the most important point!! 😛

Click for larger view

It will be printed out, laminated, and on my door!! lol I’ve never had a seizure in my life and do not plan on having one now, but it is good to prepared and prepare the kids.I’m also going to take the Ampyra at 7 and 7 as someone on it already said it may give me a burst of energy. Sleeping is hard enough at times, so I do not need something else to interfere with it.

Another reason why starting on Saturday is today was a not so good day. I only got 5 hours of sleep last night and was a bit dizzy. Then the migraine hit around 3 pm and I crawled under my covers and tried to sleep. When Roger got home we got me into the kids shower and the warm water helped some. Now I am waiting for my regular meds to start working and hopefully get some better sleep tonight.

I’ll be back…be afraid! lol

Blessings and Hope!

health · hope · medications · multiple sclerosis

Ampyra – The journey begins!!

It’s taken it’s merry lil time, but it is happening!! CVS called and they are covering the medication and it will be here tomorrow. It is to be taken 1 pill every 12 hours. I will start tomorrow night so I can set up a 9pm and 9am schedule. I have done the research and found that most of the ‘bad’ side effects are due to not taking the medication on a regular schedule.

Ampyra is the first medication approved for a specific MS issue, walking/leg strength. I am trying to not get too excited as there is the chance it may not help me, but it may!! I have to admit I am nervous and giddy at the same time. Even it just helps me with more leg strength, I will be content. I’m not expecting to start taking it and jumping up and doing a jig. Although, that would be fucking AWESOME!! lol

**don’t get too excited, don’t get too excited!!

woo hoo

Keep your fingers crossed, legs, arms, pray, whatever you do, as tomorrow night as my journey begins!! Thank you!!!

Blessings and Hope!!

bathroom · health · health insurance · mindless-thoughts · multiple sclerosis · sarcasm · shower

One Bathroom does not a happy mom make…

Here is where we are at:

tile baby!

It’s a bit slow going but in the end it will be worth all the stress. I hope! lol The guys doing this for me work in 100+ degree weather and are beat after a 10 hour day, so coming by after work is not happening. And to top it off, they got their tools stolen at their job site! What fucking loser steals another person’s tools? I hope they catch the prick…I wanna watch!! lol

Thankfully for us we have another full bathroom.

The problem is me! Shaddup! lol Getting in to the other bathroom is a chore for me. My chair only goes in so far and then it is hang on and shuffle in. The bathtub/shower unit barely fits my shower chair, so I have to sit sideways. Getting my leg up and over the bathtub is comical in itself! Getting out, well I’m glad I’m still limber! All I’m sayin’! 😛

I must be spoiled as well, as I do not know how anyone can have 5 people in a household and share 1 bathroom. It’s making me crazy!! Seriously, how do people do it? Growing up we always had at least 2.5 bathrooms in our home…sometimes more. OK, I was/am spoiled. What can I say… I need my bathroom!! 😦

Hey, I know it’ll happen and the guys are doing the labor for free, so I’m content with it all. [on the outside] 😉 Thank God for medication!!

Speaking of medication… still waiting on the Ampyra. Fucking insurance, as usual, does not want to pay for it. Bet if one of their loved ones needed it, they’d cover it. ASSHOLES!! I will get it, just hoping by the time I do it might still be able to help me…

Ah, this is life!

Blessings and Hope!

health · health insurance · hope · medications · multiple sclerosis · strength

Multiple Sclerosis: Hope on the Horizon

Ampyra

Is this the medication I’ve been waiting for? The one to give me hope?

In a nutshell, this medication helps you regain leg strength. Click on Ampyra above for the full description of this medication.

My MS counselor told me about a woman with Secondary Progressive MS who is taking this. She is walking again. At this point she is re-learning how to walk. Funny thing is you do forget how to walk. When I used to use my walker I had to remind myself how to move my legs right. So, it seems this medication may work for all types of MS. I have not heard any stories for Primary Progressive, so maybe I can be the first!

Now, I do not expect miracles. Even getting back some leg strength to be able to transfer easier would make my day. Hell being able to get into bed on my own would be amazing!! So, I have a call in to my Neurologist. I am hoping he will call me in a scrip for it. We have talked about before, but I needed to do my own research on it first. This time I am not going to let side effects cloud my decision. If I get any, I will discontinue using it.

————————-

Now, here’s the ‘nothing comes easy for me’ part. My left knee hyper-extends 20 degrees backwards. This cause lots of pain and torn meniscus issues. I had surgery some years ago to fix the tear, but last year was told it was torn again. I have not had surgery as it will keep happening if they do not fix the problem causing it… the hyper-extension [ligaments in the back of my knee are shot].

Problem, no orthopedic will do it. Reason, I have MS and am in a wheelchair so why. The insurance companies will not cover a knee replacement on a cripple. So, if I get leg strength back, what will it matter as my left leg will hinder walking for me. Now they have offered me braces. Have you ever worn a knee brace to stop hyper-extension? They are bulky and they hurt. Thanks, but no thanks. Since I’m not some sports figure I guess they figure why bother. Well I’ll tell you why…

I deserve quality of life just like anyone else. I deserve the same surgeries for this problem just like anyone else. One sports orthopedist told me that this surgery might keep me down, maybe six months, unable to move much. I about pissed myself… REALLY like that will be a big change for me. The end result might be I am able, with the Ampyra to walk again, even if I still need walking aids. I held myself together and when we left that guy and got in to the car, I cried. It was the same from the doctor that did my knee surgery.

Why doesn’t anyone give a shit about us? Why are people with disabilities treated like second, shit third class citizens? Why don’t we deserve the same chances? I’m 46 years old, I have many years left, why won’t they help me?

I am going to go back to my knee doctor once I start the Ampyra. Maybe if there is progress and he sees progress he will re-think the surgery. Oh, I have some swamp land to sell you too… notice my subtle sarcasm! rofl

I am the squeaky wheel kind of girl though. And this will end up being my new project I’m sure. Wait’ll they get a load of me…

Blessing and Hope!