What's important to you?

[1042xx]

What is important to me with MS

Access and affordability to health care solutions to assist me with living at home. In addition, new medicines that do not have the potential of death or severe disability as a side effect.

[Gudi]

To maintain (the little bit) of mobility i have now

[KSeraSera]

For me, I would like to see more research on how hormones effect MS and more therapies that address real-time issues. I realize slowing progression and looking for the cure is important, but it seems much of what is done in research doesn't really address how I can get through today.

I was very excited when the latest NMSS magazine had an article regarding menopause & MS, only to find it said they really don't know much, there isn't enough research. I think many women could tell you that there is a co-relation between their periods and their symptoms. Many doctors seem to brush it aside, maybe because there really isn't much to do about it. But, this is something that happens monthly, for years. And menopause is the same, on-going nightmares. Most gyne's don't know how to help so that it helps the MS.

So, for me, probably because it effects me now, I wish there was more emphasis on that research.

[jkforrest]

Affordable healthcare is important to me. So many people with illnesses and/or disabilities cannot afford the things that would help them. I think physical therapy would help me walk a lot easier but I doubt Medicare alone would pay for it.

Along that line, I wish the government would use a different system to figure the Cost of Living Allowance (COLA) for those of us on Social Security Disability.

I'd like to see some updated statistics. Seems like we've been hearing that 400,000 people worldwide have MS for a very long time. I just read that approximately 200 people are diagnosed every week. Are we really dieing off as fast as we're diagnosed?

The MS community needs a major spokesperson. A lot of "famous" people have MS but we don't see them saying much about it.

FYI with the new Medicare supplement adding RX (small amt)coverage and the plan I chose I was able to get FREE membership at the YMCA. I can only do the water walking thing so far *only 3 visits during the last week since I started). But that does help some. According to the powers that BE, water is a MS'ers best friend. Hope this helps you and others with a possible plan to ck into.

[WendyRochet]

i would like to know...

how you tell an MS symptom from a drug induced side affect?

Recently I took myself off the PAXIl anti-anxiety medicine had I not done this I wouldn't have known that it was causing severe constipation and extreme insomnia. I was a little bit easier to live with since this drug numbs you emotionally but the only answer my Dr. was giving me through this process was to add more drugs to treat these other symptoms.

I don't know about you but for me the 1 MS drug is enough for my little body. I'm experimenting with alternative methods for pain management now. I'm faithful to Rebif for the moment and Aleve but that beats the heck out of being on the previous suggestion of 5 meds. I'm always searching for a better way.

I'm completly crazy to find the root of were my problems /pain, etc. are coming from. I don't feel that drugs should always be the answer. I get frustrated because I know the Drs cannot even give you the answer at times. They don't even know for sure. Its scary if they act like they do because then I'm questioning honest and integrity. I'm already so skeptical because of my past experiences.

we have to be our own advocate on what is best for us otherwise your gonna just get flopped around from 1 DR to another on this drug and that.

I feel this is a game of trial and error "this worked for that, this isn't working for this"...

[WendyRochet]

i would also like to know....

why is it that insurance doesn't help pay for any alternative therapies? If we pay for it why can't we chose to use it however we like? If not all the western therapies (drugs)are what we feel as individuals are a benefit or not why are we in the situation were our choices are limited?

Don't get me wrong, I would just love to see change here

I am very grateful to live in America, very grateful to have insurance at all and very grateful for the Drs, researchers and drug companies that are helping me in this process. I have not always had insurance and I realize that there aren't any guarantees it will always be available to me.

[WendyRochet]

agree!

[QUOTE=RingpOP;1341107]I'll start off, I feel that symptom management is important... because yeah we live with MS and that's flare-ups and such... but we don't live with a flare every single day.

However, we live with the symptoms caused my MS everyday. Also, we are on medication for our symptoms that have side effects, so it seems to me like a spiral effect!

I'm tired of taking more and more medication because of my symptoms... I already have fatigue, then I take medication for the pain, which makes me even more fatigued. So I'm on a medicine for fatigue...

Does that make any sense at all?[/QUOTE


I went from a hardworking, i can do anything,exercise + nutrition to... MS and 5 drugs this last year.... now I've taken back control, so I think.

what the heck this thing is a rollercoaster I'm great, I'm ill, I'm falling apart, I'm planning goals, I'm not planning anything, ughh!

medicine no medicine either way it seems when i feel bad it doesn't matter either way? they help, then they don't help? so I'm back down from my experimenting with different prescriptions the Dr. gave me to just the rebif and Aleve. so far the most relief I've gotten thus far is from a very good chiropractor here. a heating pad, ice pack and moving. I cannot stand to lay around in pain so I'll take my tiredness and keep going...

[cloudedmoon]

Even if they can't cure me, find something which will pervent anyone else ever getting MS.

[WendyRochet]

Stickies? I just ignore the stuff I don't know

AMEN, brother! Even though I have my own problems typing, I think it's worth the effort to be specific...

Still trying to figure out how the site works, I'm sure I miss out on some of the meaning but I just look at the heart of the content and who is writing it. I agree with you though.

Specifics are nice and short and sweet is even better, when possible

[Azaelea]

I previously said on this thread...

that what is important to me is to keep my ability to walk.
It still is but what else is hugeky important to me is finding a primary care provider that doesn't click his/her tongue at me in disbelief when I talk about an MS syptom that has happened in the last while or tell me that my MS hug/back spasms are something that can happen to any of us. (that last one had me seeing red!)
I'm in Canada - Victoria, British Columbia more precisely where doctors who are taking new patients are scarcer than the proverbial hen's tooth and finding one that has a clue about MS seems to be even more difficult.
My best option right now is an awesome GP at a walk n clinic who is very sympathetic and knowledgeable so that is who I'm sticking with as a solid back up while I interview the odd possible over time.

[onlyairfare]

What's important to me about MS is that MS should not be important to me. That is, I want to have as normal life as possible, with as little ceding to MS as possible. I do not want to make a career out of being caught up in the medical industrial complex (MIC), spending all my time in doctors' offices, pharmacies, radiology suites, etc.

Other than medications to treat symptoms (Provigil for energy enough to work, various pain meds and muscle relaxers so I can get a good night's sleep), the MIC has done very little for me in terms of MS. Now they did cure my brain tumor with surgery, that was a major achievement.

I don't like getting labeled a "do-nothing" just because I have MS, and I don't want MS running my life. I want to ignore MS, and I don't want it to be important to me.

[Cat Mom]

1. Dignity
2. Independence
3. Hope

[ThisBSMS]

Whats important is ...

to understand alternative treatments, since I am not convinced meds work, at least for me - I am really unsure. I started taking Copaxone in January after I had a really messed up attack that wiped me off my feet in December and I was hospitalized for 10 days - felt like an eternity. I was hesitant to try any treatments before and besides Copaxone there really isn't much for me, because I had liver issues. So what else is out there that that at least eases up this nasty disease? I am curious to know. Or anything else that helps with this crazy fatigue? I was never that tired, at least not constantly, only before or during my attacks. I know there is Nuvigil and also some stimulants, but what about natural treatments? Thats important to me.

[Azaelea]

My sentiments too

What's important to me about MS is that MS should not be important to me. That is, I want to have as normal life as possible, with as little ceding to MS as possible. I do not want to make a career out of being caught up in the medical industrial complex (MIC), spending all my time in doctors' offices, pharmacies, radiology suites, etc.

Other than medications to treat symptoms (Provigil for energy enough to work, various pain meds and muscle relaxers so I can get a good night's sleep), the MIC has done very little for me in terms of MS. Now they did cure my brain tumor with surgery, that was a major achievement.

I don't like getting labeled a "do-nothing" just because I have MS, and I don't want MS running my life. I want to ignore MS, and I don't want it to be important to me.

I'd like to be able to ignore this disease as well but it is causing me trouble in walking so that it has begun to run my life to some extent and I find it hard to ignore.
With problems getting around I find that this vile disease had stolen the spontaneity from my life - not much gets done by me now without thinking it to pieces and I have started to feel like a "do nothing" at times .
I hate this MS and as much as I would like to have total disdain for the disease it has somehow inveigled itself into a position of importance in that I can't ignore it anymore and that makes me want to scream.

[Westgrl]

To be independent. I am single & no kids. The idea of suddenly not being able to work, drive, take care of myself is scary. So anything that will keep me independent for as long as possible is the most important thing to me.