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Getting through the hump
As we know, RRMS is different for everyone. But one commonality many of us share is the trial and tribulation of getting though the 1-2 years. For those who were dx'd during their worse, have a hard time knowing what's new, what's reoccurring, what's a relapse or what's just left over disability, or chronic MS symptoms from existing damage.
Would like to start a list of key tips of getting through the 1st 2 years of RRMS (which can be among the hardest)
~ Using your baseline to identify when to the call the doctor is key
~ Developing coping mechanisms to deal with chronic MS symptoms is critical short, and long-term
~ Understanding the 1st 1 - 2 years can be super difficult especially if you are experiencing many relapses during this inflammatory phase of the disease
~ Know the unpredictability of the disease enough to believe that: stability is possible, limitations and disability can increase just as much as it can improve and decrease
What's here today, may not be tomorrow ~ good bad, or indifferent.
Hugs to you all struggling. Sorry to not specifically address subsequent phases of MS in this discussion, but I'm counting on those of you (who know who you are) further along in this disease, to help our Relapsers and add to this list where and how you deem appropriate.
Would like to start a list of key tips of getting through the 1st 2 years of RRMS (which can be among the hardest)
~ Using your baseline to identify when to the call the doctor is key
~ Developing coping mechanisms to deal with chronic MS symptoms is critical short, and long-term
~ Understanding the 1st 1 - 2 years can be super difficult especially if you are experiencing many relapses during this inflammatory phase of the disease
~ Know the unpredictability of the disease enough to believe that: stability is possible, limitations and disability can increase just as much as it can improve and decrease
What's here today, may not be tomorrow ~ good bad, or indifferent.
Hugs to you all struggling. Sorry to not specifically address subsequent phases of MS in this discussion, but I'm counting on those of you (who know who you are) further along in this disease, to help our Relapsers and add to this list where and how you deem appropriate.
1. If you are depressed get help. Finding out you have MS is depressing and MS effects the brain and can cause depression. I took pills and went to counseling. It makes me much easier to live with. If you are depressed in effects all those around you.
2. Ask questions. Somebody has probably been through what you are going through.
3. I started volunteering with the MS Society. It made me feel connected, I learned a lot about MS , I met lots of cool people, and it was nice to be needed.
4. I buddied up with several people on the forum who had been diagnosed when I had. We PMed every day to keep each other going.
5. Be kind to yourself.
6. Get a bucket list started. It is good to have things to look forward to.
Alex
2. Ask questions. Somebody has probably been through what you are going through.
3. I started volunteering with the MS Society. It made me feel connected, I learned a lot about MS , I met lots of cool people, and it was nice to be needed.
4. I buddied up with several people on the forum who had been diagnosed when I had. We PMed every day to keep each other going.
5. Be kind to yourself.
6. Get a bucket list started. It is good to have things to look forward to.
Alex
BUMPING THIS POST UP!!!!
Hope it helps And, by all means, add on to it where you see gaps! We create these posts to be able to help each other for years and years to come!
~Shell
Hope it helps And, by all means, add on to it where you see gaps! We create these posts to be able to help each other for years and years to come!
~Shell
The first four years were completely nuts for me. I had a lot of recovery to do, my eyes were weird, I had cognitive problems, no energy, trouble walking... the list goes on and on. And my neuro wasn't much help - he'd say, 'Well, that's MS!' and act as if there was nothing he could do.
So keep in mind that IV steroids are available if needed, and if you have a bad flare, it may be the way to go. I used orals for my first flare, which kept me functional, but IV would have been better.
The first four years typically are very difficult, as you've probably gotten some neurological damage from the flare that got you diagnosed. Expect to be recovering for a while - perhaps as long as seven years before you really feel like you're in remission.
So keep in mind that IV steroids are available if needed, and if you have a bad flare, it may be the way to go. I used orals for my first flare, which kept me functional, but IV would have been better.
The first four years typically are very difficult, as you've probably gotten some neurological damage from the flare that got you diagnosed. Expect to be recovering for a while - perhaps as long as seven years before you really feel like you're in remission.
Thanks for all the comments, it is odd when you see other people going through the same feelings that I am having, it makes me feel like I am not nuts.
I so agree that people don't get it, and that looking good, ( make up) really does wonders, and doing up your hair in a claw clip, they think that you are the most and best example of MS. Or so , that is what I have been told.
I hate that kind of comment, and it is hard not to say something, but like people have said, bite your tongue, or your cheek, and smile.
I am getting so many mixed emotions again, as they want mre opinions and such, and instead of going ahead, I feel like I am going backwards.
Most days I do well too, and the MS is there, but not the front runner, but the last week or so, it has changed spots, and now we are in the back. Partly with starting Copaxone, and it is going ok, but now the Dr. calls again to question everything.
I just don't know what to do, or where to go anymore, or just to give up on the Dr. community and go this journey on my own..............( I really know that I can't) , but the want is there, and am I really going nuts.....
I so agree that people don't get it, and that looking good, ( make up) really does wonders, and doing up your hair in a claw clip, they think that you are the most and best example of MS. Or so , that is what I have been told.
I hate that kind of comment, and it is hard not to say something, but like people have said, bite your tongue, or your cheek, and smile.
I am getting so many mixed emotions again, as they want mre opinions and such, and instead of going ahead, I feel like I am going backwards.
Most days I do well too, and the MS is there, but not the front runner, but the last week or so, it has changed spots, and now we are in the back. Partly with starting Copaxone, and it is going ok, but now the Dr. calls again to question everything.
I just don't know what to do, or where to go anymore, or just to give up on the Dr. community and go this journey on my own..............( I really know that I can't) , but the want is there, and am I really going nuts.....
Thanks so much for this as a somewhat newly dx'd MSer it is great to hear these thoughts. I have found it much easier over the past month to tell people when they ask what is wrong with me - severe foot drop for those who do not know causes me to walk with a cane - that I have MS. I get some oh okay and some I am sorry and some say well you seem to be handing it well. Most days I do, some days not so much but that is life with MS each day is an adventure! Never know what it will bring!
COMMUNITY LEADER
- Be prepaired for friends, loved ones and the weird guy down the road, to inform you about the 'cure' they heard about, that a friend of a friends of their next door neighbour's cousin tried and now they dont have MS anymore. Do not be the fool that parts with his money, the unfortunate truth is that there isn't a cure (yet) and if there was, dr's all over the world would be the first to be jumping up and down about it, closely followed by the insurance companies. Just smile and say thanks, because their hearts is in the right place.
- On a similar note, be prepared to hear from friends, loved ones, coworkers, boss etc (and their dog lol) that 'you look so good' after awhile it can start to get really irritating, especially when you dont 'feel' good. Take it as the compliment it was meant to be, gritt your teeth if you have to but try not to dont bite their head if they catch you in a bad moment.
Cheers..........JJ
- On a similar note, be prepared to hear from friends, loved ones, coworkers, boss etc (and their dog lol) that 'you look so good' after awhile it can start to get really irritating, especially when you dont 'feel' good. Take it as the compliment it was meant to be, gritt your teeth if you have to but try not to dont bite their head if they catch you in a bad moment.
Cheers..........JJ
This topic was such a great idea. Thank you so very much, to all who have contributed. I received an invite to a talk that covers how to identify and manage your symptoms. Biogen is sponsoring it. I wish I could go, but it's in Yakima, WA. Too far away for a non-driver.
I am struggling a lot with figuring out what is a relapse, and what is just chronic damage. It's all so confusing.
Tammy
I am struggling a lot with figuring out what is a relapse, and what is just chronic damage. It's all so confusing.
Tammy
Shelly,
What a GREAT idea!
1) As to when to call the doc. I am so blessed to have a neuro who , when asked this question, answered "anytime you need to talk to me.: I know, those types are rare, but YOU know your body the best and if something seems amiss then call the doc. If no answer, call again. YOU are paying this doc to take care of you.If he can not return a phone call, then it's time to look for another neuro.
2) I had to leave a great job (and its salary ) when I was diagnosed (long story) So after many months of grieving and whining , yes whining, I decided I needed to do something constructive. Gardening is now my passion and I love it! MY biggest thrill is finding bargains on live plants (like 5 cents) when all they need is water. I'm educating myself in the gardening world and it has given me something to do with my free time except brood.
3) No one painted a pretty picture (ask around,lol) I was depressed when first diagnosed and was vocal on these boards. However, I became comfortable in my "new" body and learned when I needed help. A phone call to your GP will at least yield a urinalysis which is a culprit in many flares or pseudo-flares.
4) Find a friend, either here on elsewhere to share your concerns and bounce your ideas off of. When I was diagnosed there were 4 of us the same month. We bonded and sent each either PM (private messages expressing our fear or frustration) Eventually some of us were lucky enough to meet in person! What a grand experience that was!!! Finally meeting someone who had the same complaints, fears, uncertainty that you had was magnificent!
5) A lot of times you are diagnosed while you are in flare, therefore the reason for the diagnosis. Do not think that the rest of your life will be like this!!! You will have flares and remissions and some (both types) are better than others. But, you cannot stop living your life just because of a diagnosis!!
6) Chances are , if you think back , you had similar symptoms for years and played them off to some other explanation. You survived these inexpiable body sensations to the cold or being tired or twisting your ankle,etc. The major connection in all of these events, is that you continued to live your life!
7) Yes, the diagnosis is devastating even if you know it's coming! It is NOT a death sentence but a set of rules you need to follow to keep your body in it's best possible shape:
*exercise when your energy level allows
*follow your doc's orders
*consider physical therapy to improve your aches and pains ( mine is neuro -literate ) and is very good at noticing neurological signs and symptoms sometimes before I do.
*Take the meds prescribed and inform your doc about side effects,etc.
8) It is NOT a death sentence. Yes, you will probably be prescribed an disease modifying drug (DMD) and it should help keep symptoms at bay, But, do know there are a myriad of drugs, solutions and therapies to help you get thorough each rough spot, with even more on the horizon.
9) No lie, rough spots do crop up but they are usually a urinary tract infection,etc. and can be controlled promptly.
10) Your family needs to know your diagnosis. Each of them will handle it differently. The NMMS has books for school -age children and I believe early teens. My kids are older and they all handled in a similar but different way. My oldest,Pharmacy School, did presentations on DMDs; my middle child who majored in Scientific Illustration (mom brag graduating next week!!!!!!) and did her Exit Project on MS and drew a visual brochure to explain the disease and my youngest, did a report in Health about MS. I guess my final message is inform your family. They still love you and they need to know what is going on with you.
Ren
What a GREAT idea!
1) As to when to call the doc. I am so blessed to have a neuro who , when asked this question, answered "anytime you need to talk to me.: I know, those types are rare, but YOU know your body the best and if something seems amiss then call the doc. If no answer, call again. YOU are paying this doc to take care of you.If he can not return a phone call, then it's time to look for another neuro.
2) I had to leave a great job (and its salary ) when I was diagnosed (long story) So after many months of grieving and whining , yes whining, I decided I needed to do something constructive. Gardening is now my passion and I love it! MY biggest thrill is finding bargains on live plants (like 5 cents) when all they need is water. I'm educating myself in the gardening world and it has given me something to do with my free time except brood.
3) No one painted a pretty picture (ask around,lol) I was depressed when first diagnosed and was vocal on these boards. However, I became comfortable in my "new" body and learned when I needed help. A phone call to your GP will at least yield a urinalysis which is a culprit in many flares or pseudo-flares.
4) Find a friend, either here on elsewhere to share your concerns and bounce your ideas off of. When I was diagnosed there were 4 of us the same month. We bonded and sent each either PM (private messages expressing our fear or frustration) Eventually some of us were lucky enough to meet in person! What a grand experience that was!!! Finally meeting someone who had the same complaints, fears, uncertainty that you had was magnificent!
5) A lot of times you are diagnosed while you are in flare, therefore the reason for the diagnosis. Do not think that the rest of your life will be like this!!! You will have flares and remissions and some (both types) are better than others. But, you cannot stop living your life just because of a diagnosis!!
6) Chances are , if you think back , you had similar symptoms for years and played them off to some other explanation. You survived these inexpiable body sensations to the cold or being tired or twisting your ankle,etc. The major connection in all of these events, is that you continued to live your life!
7) Yes, the diagnosis is devastating even if you know it's coming! It is NOT a death sentence but a set of rules you need to follow to keep your body in it's best possible shape:
*exercise when your energy level allows
*follow your doc's orders
*consider physical therapy to improve your aches and pains ( mine is neuro -literate ) and is very good at noticing neurological signs and symptoms sometimes before I do.
*Take the meds prescribed and inform your doc about side effects,etc.
8) It is NOT a death sentence. Yes, you will probably be prescribed an disease modifying drug (DMD) and it should help keep symptoms at bay, But, do know there are a myriad of drugs, solutions and therapies to help you get thorough each rough spot, with even more on the horizon.
9) No lie, rough spots do crop up but they are usually a urinary tract infection,etc. and can be controlled promptly.
10) Your family needs to know your diagnosis. Each of them will handle it differently. The NMMS has books for school -age children and I believe early teens. My kids are older and they all handled in a similar but different way. My oldest,Pharmacy School, did presentations on DMDs; my middle child who majored in Scientific Illustration (mom brag graduating next week!!!!!!) and did her Exit Project on MS and drew a visual brochure to explain the disease and my youngest, did a report in Health about MS. I guess my final message is inform your family. They still love you and they need to know what is going on with you.
Ren
Don't let MS rule your life. Be gentle on yourself limit the amount of MS 'whinge time' to 10 minutes per day at the same time per day.
Use the forum or a journal to vent your fears, sadness, rage, anger, bitternes when required. Feel free to share your joy, happiness, gratitude, and peace with the forum and those around you as frequently as you wish.
Loved ones find it very difficult to understand MS and all the weird symptoms and may lose patience, and also talking about the disease all the time tends to make the person with MS feel worse talking on an on about it.
Great idea Shelly.
Blessings
Alex
Use the forum or a journal to vent your fears, sadness, rage, anger, bitternes when required. Feel free to share your joy, happiness, gratitude, and peace with the forum and those around you as frequently as you wish.
Loved ones find it very difficult to understand MS and all the weird symptoms and may lose patience, and also talking about the disease all the time tends to make the person with MS feel worse talking on an on about it.
Great idea Shelly.
Blessings
Alex
COMMUNITY LEADER
Great Idea Shell,
I'd like to add:
- Dont push the panic button at the 'first' signs of your sx returning. Not every little twitch or tingle means your going into a relapse. Wait it could just be a psuedo from getting over heated or doing too much etc so be calm and rest up. Its not a good idea to panic even if you do end up in a relapse, so no panicing.
- DX doesnt mean your life is over, its probably different than what you expected your life to be but YOU are still YOU! You have to be smarter but you dont have to give up your dreams so keep on living the life you dreamed about and live it well.
Cheers.........JJ
I'd like to add:
- Dont push the panic button at the 'first' signs of your sx returning. Not every little twitch or tingle means your going into a relapse. Wait it could just be a psuedo from getting over heated or doing too much etc so be calm and rest up. Its not a good idea to panic even if you do end up in a relapse, so no panicing.
- DX doesnt mean your life is over, its probably different than what you expected your life to be but YOU are still YOU! You have to be smarter but you dont have to give up your dreams so keep on living the life you dreamed about and live it well.
Cheers.........JJ
Thank you both for this. I am in the inflammatory phase with experiencing flares about every three months. I am struggling significantly with this in truth. I am not sure when I should ask for IVSM or suffer through it. I am coping okay with the chronic symptoms and the flares so I am afraid my suffering through will cause more damage. I'm sort of lost ---
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