MSAA Online Focus Group - Last Day! - My MSAA Community

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MSAA Online Focus Group - Last Day!

Happy Friday everyone! For the final day of questions, what is the most important thing you’ve learned about managing your care that you wish you had known earlier? Think across all aspects of your life, e.g.

- Treatments

- Support networks

- Wellness

I can't thank you enough for all your amazing responses and discussions with each other over the last two weeks. I hope you've enjoyed participating and hopefully may have learnt something about your fellow community members along the way :)

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It informed me of all the meds,you read about them but then I forget, good charts,What to reasonably expect from your dr,and we all suffer from the same disease but it certainly can be different for all of us, and my take is there is not enough local stuff going on with ms,maybe I need to research it more

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I've lived with MS for over 40 years, and the most important thing that I've learned is that every MS attack, reactions, symptoms can be different. Not just between different people, but in my own body. It took me years to recognize when I was having an active MS attack. Since the onset of SPMS, I have even more difficulty recognizing what is MS, and what is " something else." I know my body better than anyone else does, but it is still a stranger to me in many ways. If it didn't keep changing so much, I might get to know it better!

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How true is that leking1 !! 🤗💕🦈

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Absolutely right on!

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It is a mystery to me! I thought maybe I was the only one feeling this way.

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I think what I have learned over the past 13 years since my dx is that even with some of the progress made with research, there is still not enough known about the causes and cures and the differences amongst all patients. And there is not necessarily an agreement on how MS is managed or even diagnosed amongst different physicians

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I agree. And back when I was DX, it was with spinal fluid, then confirmed later on, when MRI's were invented?? No treatments were available for several years...then Betaseron, but there was a lottery for that....MS diagnosis and treatment has come a long way, but is constantly evolving, both in science, and in our bodies!

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Be your own advocate but work with your care team to get the best results. In doing this I have gotten so far the results I desired which are so far the best results and out comes.

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So true! It’s so easy to fall between the cracks, so to speak.

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Other people's comments outside of our normal lives are always interesting. Being misdiagnosed regardless of clinical signs and symptoms, then being forced to figure out what to do yourself has been a revelation. From foods we should eat to exercise we should do, everything known to humans is fair game for MSrs.

Almost 50 years ago I changed my diet to one where few to no artificial ingredients were included. That was difficult then but much more so now as carrageenan, many unpronounceable named things, unwanted items like high fructose corn syrup seem to be in everything. The diet change was significant. Within several weeks I was stronger, more energized and more able to "do" my life. I have maintained that diet ever since.

Then I changed what medications I would and wouldn't tolerate. I do believe when we have adverse side effects from a prescription is has meaning. I stop the drug and request an analog. Sometimes, the new drug is as bad or worse. If it is worse and not helping, I looked into the old literature from the time of our grandparents and great grandparents. There really are many natural remedies we can make or get using supplements that will work in place of Rx'd pharmaceuticals. It then became a project to determine which ones were effect and safe.

Further along in time as my functions began being a problem or started to disappear my ex husband and I began developing work arounds....we knew it as building new pathways in my brain. That worked so well I I kept at it for about 50 years...especially walking and not falling and swimming and dancing--even belly dancing!. I even ran in some 30 mile marathons. I was almost always dead last, but it didn't matter because I "did it". I was determined I would maintain my hand strength and agility and the challenges of designing. I began knitting, crocheting and sewing frequently and gardening with a vengence. My mind was always challenged by my jobs and my family. I began writing poetry. Some were published in anthologies. I wrote professional research papers that were published. So it all was good hard work.

Now in late 70s, that all continues (but not the research papers!). I do not have a work around for the fatigue that plagues my life. My strength is diminishing as I cannot run anymore...how I regret that. I even dream about running. Sigh.

I think maybe it is time for me to accommodate some changes and not fret. I might write a book about all this. Especially since the gut biome has now been found to be a potential contributor to the development of MS. That is a MYSTERY!! but we are getting a better understanding!

In the meantime, my spiritual life enhances my biological life and except for the fatigue and coordination issues, the occasional really bad brain fog and strange emotional events, life is good.

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Thank you for sharing that. It really encourages me to keep plodding on and not quit. Thank you again 🤗

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I was diagnosed when their was only three drugs available. The chart is a game changer for those who have been diagnosed in the past ten years. I never had a problem with the support system. I always new where to find a group in person or on line. I think the wellness aspect is just coming into its own. People are realizing they have to start from within. Times they have changed. I still have to say advocate for yourself every step of the way. Stay healthy my friends!

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I’ve had m.s. for over 30+ years every day and night I don’t know how I’ll be, it’s a challenging disease to so say the least. I’ve been on 4 DMT those far. I have worked for the last 18 years and I still walk. I will not let m.s. take me down if I have my say. A positive attitude makes all the difference. Good luck to everyone on this sight and I’m glad you’re all here I get more information here than from all the medical professionals. Thank you!!!!

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It takes time to absorb all the info. After deciding on a med take one day at a time,don't beat yourself up, focus on what you can do, The most important for me is God will help you just ask and believe

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Be your own advocate, but when MS (cognitive, emotional...) issues get in the way of communicating with your healthcare providers, bring a witness - family member, friend - with you to appointments to convey your concerns.

Most of all, though, keep moving! Even if you have limited mobility, consistent movement, stretching, etc, can do wonders.

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To be honest I never read any other responses. I used this as somewhat of venting.

Hopefully this will make new will be beneficial to there start of treatment and understanding of the disease.

Thank for the chance to participate.

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Thank you HelenHU this has been an interesting 2 weeks. I know it was more for people who live in the States, but I have and will continue to learn about ms from this forum. Being part of the U.K. NHS system, where I live we have a very over loaded patient doctor practise. Trying to get an appointment is nigh on impossible. I do not have a personal relationship with a doctor, as they are always changing. I only see my neurologist once a year because I have been told quite clearly that there is nothing they can do for PPMS. Yesterday that changed but we will see if I am a candidate for Ocrevus, considering my age and how long I have had it. Getting any kind of care is very hard. I have been waiting 5 months for the occupational nurse to visit my house to make sure that my walking stick is at the right height, also my walkers. She is also supposed to be checking out my shower and bed, but like I say financial resources are lacking. So this forum is a God send, I appreciate everyone and all their support. Blessings Jimeka 👍

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Thank you for the opportunity to speak about my MS and my life.

NEVER GIVE UP! Be an advocate for YOURSELF! Love over hatred. Everyone s MS is their own and this disease is forever changing. Trust in yourself and for me My Lord. Find a good neurologist you can trust. Be GOOD to YOURSELF.

It's OK that you mess up because this disease is hard to live with each and everyday. It's ok to be sad, mad, rejoice in your achievements. Ask for help and TELL others how you want to be treated.

I live with RRMS for over 10+years. I never thought I would be as healthy and able to live as I am now. Hallelujah

I also know eating healthy and exercise is key in living with MS right from the get go. Get professional help if you are depressed or think you may feel sad.

Thank you again HelenHU and everyone on this forum. You have all helped me speak my mind and set me free.

God bless

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HelenHU Not sure except that I wish I had discovered HealthUnlocked forum sooner! :-D

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I agree; I'm (was a nurse and always knew what questions to ask). When we lived in NY (where I was diagnosed 2004), my husband & I attended several educational dinners that were excellent. When we moved to VA (2008), we went to a support group meeting & went to an excellent educational retreat, but this is excellent, because everyone is sharing & I wish I knew about it before as well

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I learned to question every single thing a doctor prescribes or tells me to do. ;)

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Finding the right doctor, aware of symptoms, aggressive when genetic and better medical awareness after multiple test done. Thanks

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I’ve learned that having people to discuss MS with is so very important, as my family and friends really struggle to understand. This forum has been an enormous help to me, both for support and for information. I’ve learned, and keep learning to adjust and plan. “Hope for the best; plan for the worst.”

I’ve learned to keep reading about MS in general, about my current DMTs and others.

Thank you for letting us participate in this focus group.

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Don't look up to much online about it. That will spook you.

Know this is not fatal and actually life can be okay!

You will discover things about yourself that you never knew. Good things!

Grieve, but not to long! Then keep going.

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Being told I had MS frightened me so I followed Doctors orders. I thought if I did that I would have a better chance of finish raising my family. I made bad choices about many things because of what might happen. I know now I should have ignored my symptoms, as I had done all my life and just kept going no matter what. The Doctors and their medication came with all sorts of side effects which caused many more problems.

I guess the take away is I should have trusted myself and the body I inhabit.

As far as treatment, it has been hard to get off the drugs but slowly it is happening.

I am now 67 years old so wellness is not an option. Support networks are just the people you love and the people that love you. If I were to give others advice it would be to not trust others, Doctors included but trust yourself. Don't let fear drive your decisions, only you knows what is right for you. Calm yourself and give your body time to help with the cure, go slow with the medication. Don't let anyone bully you and stand up for yourself.

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"...If I were to give others advice it would be to not trust others, Doctors included but trust yourself. Don't let fear drive your decisions, only you knows what is right for you. Calm yourself and give your body time to help with the cure, go slow with the medication. Don't let anyone bully you and stand up for yourself."

You are exactly right. You have hit the nail on the head.

I found it best for me to research any drug suggested and that is exactly how I handled my RRMS and why I have taken no DMT ever. It is NOT how I handled this SPMS when I found my legs were not fully in my control. I had heard of various drugs and when my doc suggested ampyra, I was fully on board at least to try it. I am so grateful. I think there are various brand new drugs that will help...mayzent and ocrevus are two. I haven't tried those...if they would help with the terrible fatigue, I would though.

I am so pleased to have read all the responses. You are a fine group of people. And while I know nothing of HelenHu, I hope we hear more from her.

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Various MS Websites.

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I think the hardest thing to get my head around was what an MS relapse was and I let everything progress further than it should have. Understanding this better has helped me be more proactive but I wish I would have understood this sooner. . .

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The most important things I have learned about managing my care are: learning that I am not alone, learning how and when to more effectively advocate for my self, taking full responsibility for my health. In order to do this, I needed to connect with others with the same diagnosis through forums such as this one, learning more about this disease in order to interact with health care professionals from a more informed perspective. In order to do this I had to discard blind trust in the system, understand that no one can advocate for me as effectively as I can do for myself. Odd as this may appear, in my MS Journey, I have gained much. Prior to this experience, I thought I was in control of what happened to me. Now I know otherwise. This has made me more generous, compassionate, empathetic, and forgiving of my fellow humans.

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To Health Unlocked, Helen and all those who participated answering this series of questions: You are the tutors, I the tutee. I have learned so much from all of you. In every way I know to say this, thank you!

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I totally agree!

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I would not be as upbeat, or forthcoming by telling my doctors I feel great even when I don’t. Because by not telling the truth has caused me to wait 4 years and 5 SSDI hearing later appealing why I can’t work. The test results show my lesions and the amount of exacerbations are listed but because I look good, say I’m doing good even riding my bike. I said I ride a mile a day, never said it took me 5 hours to do it, of that it’s a 3 wheeled pedal power bike. But if you can walk and talk you can work. So says a review person who just met you that morning with statistics from some big city. Sorry, I’m so over this disease and it controlling me to the point that I’m starting to give up. Who knew at 55 I would surrender.😳😔🥺😩😢

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What do I wish I had known earlier in the management of my MS? Well, I wish I had known about DMT's & support networks. However, when I was diagnosed in the early 1970's, there were next to none. It was 25 to 30 years before peer support networks formed & DMT's started being approved.

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I was fortunate to be diagnosed within a week of seeing a neurologist after being seen for my symptoms and had only had intermittent symptoms for less than a year leading up to that. I am a nurse and could tell something was seriously wrong from the way the neuro was acting as he performed my neuro exam. I was afraid to ask what he thought was wrong with me. Later that night I was ready to figure out what it could be so googled some of my abnormals that seemed pronounced to me. MS was actually the best diagnosis on the list so when I found out I was relieved.

Since you can't really diagnose the type you have upfront the main information needed is treatment options and support available. Info on cooling devices and where to get them as well as other services that could help like PT is great info to have upfront.

Maybe a list of common symptoms like fatigue and how to minimize/manage would be great too.

Just knowing there is hope to slow the disease was huge.

Thank you for your work to help support us with MS!!

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Physical exercise and nutrition are important aspects for staying active.

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MS started hitting me hard in the late 1970s, diagnosed in 1980. As time went on I learned to slow down. That is the most valuable thing I've learned. Most tasks, even something very ordinary like washing the dishes, don't have to be done right this minute or all at once. You can take your time--and it is your time, not someone else's, particularly if you're lucky enough not to have to work. If it doesn't get done today, it can be done on some other day. I've been surprised at how much I can actually get done when I don't try to finish a job all at once or in a hurry.

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I was diagnosed when only 3 DMTs were available. It took me 3 years to be diagnosed. I chose Copaxon and took it for 12 years. I have learned in the past 14+ years that you can be ok with MS but you have to be prepared for the bad. I am retired and have always set a goal of something to accomplish every day, even if it was just making my bed. And some days that was only thing i did. But now I train with a trainer once a week, walk and ride my stationary bike every day and check this site, which has been the best thing that has kept me going. Thank you Helen!

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I wish I would have known where to look on the internet for information about MS. What kind of a diet & exercise are good for people with MS. Information on the different DMT there are on a side by side comparison would have been nice.

Keeping as healthy as possible is very important with MS as any little cold can turn into an MS attack. It's important to tell your doctor everything Even if you don't think it's important. Some of those little insignificant things can make a difference in the treatment the doctor prescribes. It's also important that all of your doctors work together & all test results should be shared between doctors.

Having a focus group such as this one is important because it's a place where others know what you are going through. There is a lot of information passed around that you might not have known about otherwise.h

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Thank u for the valuable info, I’m a retired NHS staff nurse in the UK with 28 years experience so you’d think I would know everything but I definitely don’t 🤭🤭🤭🤭🤭🤭 I was diagnosed with very active RRMS in December 2017. U are definitely a massive help to trying to understand MS and the various treatments. I’m on Tysabri which is helping but not the symptoms unfortunately 🙄🙄🙄🙄🙄🙄. Take care from the UK xxxxxx

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MS is about adapting to a new way of life.... which is always changing. The key is to stay positive....and smile often!! Things could always be worse. 🧡💪😁🧡

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The support available and how my experiences are similar to others. I have been helped and hope my sharing had been helpful to others

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I don't really have anything to add, but thanks for stimulating all the discussions

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I can’t think of anything about support groups or treatments that I wish I had known earlier 🤷‍♀️ I wish I had known that being in ketosis would work so well for my symptoms during all that time I was struggling every day while following a MS diet 🙄 I wish I had known about float tanks years ago. I wish I had learned how to properly fast decades ago.

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sorry I am late but the most important has to be support networks, who but them have any idea of what it takes to understand just urinatung upon yourself when moving from hot to cold. Who else but them understands that you just need to stop for five minutes, or that what tasted great yesterday today hurts to eat. Yes, I believe that support groups are the most important.

Royce

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