Your greatest tip for someone with MS

[msJenna]

Hi all! Have been looking for a community to hang and vent and thankfully found all of you! A little about me. I was diagnosed with relapsing-remitting multiple sclerosis in the spring of last year after my 2nd occurrence of optic neuritis. First occurrence was in 2014, second in 2015. I started on Plegridy, a 2x/month injection of beta-inferon and have had no relapses over the last year.

No longer being in limbo is more of a relief than you can possibly imagine because MS is an exhausting mindgame.

So here's my question! Do you have a good tip for someone relatively new with MS? Nice meeting you all! Stay strong!

[stillstANNding]

Live your life, Jenna. Do not hold back. Live it to the edges. Do not treat yourself like a flower in a glass dome. Do. Go. Enjoy. Accomplish to the best of your ability.

Learn to listen to your body. Make time, quiet time if needed, for friends. Join something bigger than yourself.

Read.

Welcome to BT. Here's some chocolate,
ANN

[Jeanie Z]

Welcome!

:) Hi Jenna and welcome. I've had MS about 55 years. I live alone and still drive, shop and do some cleaning. However I have very little energy and sleep a lot, but then I am 75.

Since 2000 I have been on a nightly capsule of LDN. Since going on LDN I have quit having new symptoms and quit progressing. However by the time I started it I was already using a scooter after many falls and broken bones. I did not have any improvements on it as some did but I am happy to be staying the same.

LDN is low dose naltrexone and info at Only registered and activated users can see links., Click Here To Register... and at Only registered and activated users can see links., Click Here To Register...

I send my RX to Only registered and activated users can see links., Click Here To Register... and he ships overnight. MY RX is written for 90 caps with one refill. I see my PCP twice a year. If I have a problem I make another visit. Jeanie :)

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[agate]

Welcome, msJenna!

It's a shame you've been hit with this diagnosis but at least there are others with the same disorder to turn to, and we're some of them here.

We're a low-keyed, easy-going group.

Many have been on this board for 15 years and longer, but don't let that put you off. We've learned a thing or two about MS and how to get along with it.

I'm one of a couple of people named Joan here (the other has the user name of nuthatch). I was diagnosed with MS in 1980 and am still kicking around.

I was on Copaxone for nearly 3 years and Avonex for 3 years but nowadays just take 5000 IU of vitamin D3 daily--plus aspirin regularly for arthritis and a diuretic and potassium supplement. I take Claritin for chronic sinusitis, plus a small dose of Lipitor to keep the cholesterol where it should be.

A good tip for someone new to MS? I'd say: SLOW DOWN. Take it easy. Rome wasn't built in a day. There's almost nothing that you really have to do at this very minute or even today if your body isn't cooperating.

If you're still working at a job where you're not your own boss, that's hard to pull off but even the jobs you absolutely have to do can be done in ways that won't make your MS give you problems.

[Virginia]

Welcome to our group Jenna! When I was first diagnosed I read all that I could about MS and tried to learn what I could about how to deal with it and with insurance problems relating to getting one of "disease modifying drugs". This group helped me so much.

Ann, was right about living your life to the fullest, but Agate was also right about slowing down. By this I mean, live as well as you can, but if you feel fatigued then go ahead and acknowledge it and rest.

I was on Avonex for one full year, then I switched to Copaxone for six months. Copaxone did not work for me personally, so I then changed to Rebif. I have been on Rebif for 14 years and 5 months.

It sounds as though you have not had much progression to date. Getting on and staying on a Disease Modifying Drug as young as you can and as quickly as you can is probably one of the best things you can do for yourself. There are some on here who are not on them for various reasons and do reasonably well, but since you sound as though you might be fairly young sticking with one that works for you is probably the best thing you can do to protect against any further attacks. Since your eyes are involved, you don't want to take any chances for sure. I had optic neuritis and that is another reason I do not want to get off Rebif.

Ask questions and get to know people who will support you. We vent and complain on here, but we also share other things.

I hope you get to know us and let us get to know you. As Joan said we are a pretty easy-going group.

[SalpalSally]

Welcome Jenna to our group!

[Howie]

And no one has warned you about me? Good! Welcome to the group, and don't believe anything you hear about me.

[Lazarus]

Welcome!
I continued my professional life for 8years after my diagnosis. Since then I have tried many therapies and have had lots of success. You and I are lucky that research has provided us with some medicines. I think it was 1993 when the very first MS drug came on the market.

Even now I am very active...really! I was diagnosed 26 years ago. (Also after an attack of optic neuritis)

All of us have enormous experience and we all have tricks to offer that help us to live full lives. Ask any time you have a question.

[Sunshine]

Rest every day. Eat a low saturated fat diet. Do not smoke. Do not get fat. Exercise every day. Swimming is great because it keeps the core of your body from heating up.

Find a neuro you like and gives you time.

[funnylegs4]

I do NOT have MS but I agree with the advice given here. Like they said rest if you have Neuro Fatigue. If you do too much and burn yourself out your nervous system will not be happy at all. Maybe read some books written by people with MS.

[Cat Dancer]

Welcome to our little world...although I (and I'm sure the rest of us) are sorry you have to be here. I've had MS for more than 35 years. I suggest you start on any of the disease modifying drugs that seem to best suit you, and do that as soon as possible. You may change to a different one, but stay on one. I am convinced I would have suffered much less disability if they had been available when I was first diagnosed, and if I hadn't stopped taking on for a few years -- after which I suffered a major exacerbation and am now severely disabled. Try to keep as active as you can. Eat well, keep control of your weight. Live life as fully as you can, enjoy as much as you can. Plan your future as if the worst may happen, hope that won't happen, and enjoy each day in front of you. Find a neurologist you like and trust, and listen to her advice.

And hang out here for a few laughs, a little social time, some really good research from time to time, and make friends. Many of us have been here, on and off, for years. We love to hear a new voice.

[Pegakafarmgirl]

Hey Jenna, welcome to our world.. and do believe what you hear about Howie.. he is a staple here,,

I have had MS for over 30 yrs,, my sound advice is attitude,, you have to have one with MS, because sometimes its a rollercoaster ride,,

anyway , glad U found us,,

[agate]

msJenna, in case you've forgotten about us, we haven't forgotten about you--and hope you're doing well.

You're fairly new to MS and maybe new to message boards too?

Hope you'll feel free to jump in with your comments, questions, opinions.

We don't bite. Some people have pets and I can't say whether they bite, but the people on this board are a kind bunch, very understanding, or they couldn't have lasted this long on this board.

It sounds as if you're doing OK on Plegridy. That twice-a-month shot sounds good to me. Do you have any side effects from the shots?

[SuzE-Q]

My tip would be to have a good Long Term Disability policy in place that could substitute for your income if ever needed.

It could bring great peace of mind.

And if there's a risk that pre-existing conditions may be excluded in the future, it would be good to have it already in place because it's unlikely and more difficult to remove coverage from someone who already has it.

Welcome!

[Virginia]

I really do second what Suze-Q had to say. Most especially about the Long Term Disability. If you or a spouse has access to this by all means take advantage of it. I have a friend who took it out through her job. She was diagnosed in 2000 and had almost forgotten she had it. She had an attack and has been living on mostly that every since 2001. She has no idea what she would have done without it. She is still just in her 50s, so has a long time to go on it. I wish I had had it. I do have an income from deceased husband, but could have lived so much better with Long Term Care. In her case, being divorced, she would have had NO income other than Social Security Disability.

Jenna, hope you check back in and if possible listen carefully to Suze-Q.