Hello to everyone, this is my first post. I have been recently diagnosed with RRMS, after 4 years of ‘insufficient evidence’ phase. Turns out I have had MS since 25 years ago. But my diagnosis and treatment came just lately. The problem was that I was never on the look out for symptoms, so it was confusing for the doctors. That is why I started to keep journal of my symptoms and read more about MS symptoms. Since I am still in the learning about my disease, I have few questions, maybe you can help me. What are the main things that one should stay away from? Does one really have to take a step away from life, in order to preserve one’s health? I am low key scared coz the meds r affecting my focus, I can’t tolerate heat and sun.
Excuse my beginnerness 🙂: Hello to... - My MSAA Community
Excuse my beginnerness 🙂
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10things
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Welcome to the group 10things , sorry for the reason. Everybody's MS is different. For me, really hot and cold days are not good. Are you on a dmt yet?
If you haven't already, you should reach out to your MS team about your focus. There are meds to help, or your dr may decide to switch you to something different. I am sure others will have more suggestions. We are not drs here so you should definitely speak with your medical team.
Keep us updated when you can.
Yes I am on Tecfedera. It actually gets me hot flushes but super charged🙂
Keep living your life! I have to avoid direct sunlight and heat, too, so it kind of hampers my summer activities, but having central AC has been a lifesaver. Just learn what your triggers are, and work around them as best you can.
Since you've already been dealing with this for so long, you have a good idea of what to expect now. Nothing will really change, although hopefully the doctors will give you meds that can help the symptoms. If you're having bad side effects from them, please contact your doctors ASAP.
My diagnosis took even longer than yours, so it was just a big relief to finally get some answers. Just take your time and get information from legitimate MS sites (like this one!). We have a terrific group of people here, and there's an excellent chance you'll find people who have dealt with the same things.
Hello, and welcome! I'm sorry to hear that you have MS. Sometimes waiting for a diagnosis can be hard, though, and some even feel a sense of relief with their diagnosis.
I'm impressed that you know more than one language! If I tried to learn a second language, my head would probably explode. 😂
One thing I like to tell new people is that the treatments for RRMS are very good now, and there are a lot of them, so you have an excellent chance of delaying progression, and there will be newer and better treatments coming.
I'm so happy that you found us. We love to help people out!
Okay, I will send you a link to the very best MS doctor on YouTube, and possibly anywhere. His name is Aaron Boster, and his mission is to help us know how to manage MS.
You don't want to smoke, eat a lot of junk, drink too much, or go without a disease modifying therapy. You have to exercise.
No, unless you're having a relapse where you feel really poorly, you don't have to miss out. You just have to keep from overheating and get enough rest. Which meds are making you lose focus?
I am on tecfedera (dmd) but I think the Cymbalta (anti anxiety) is the one that’s making me space out. Thank u so much for sharing this doctor’s channel. Appreciate it 
Oh, and you're supposed to drink a lot of water so your brain stays hydrated. Dr. Boster will explain.
I know it's hot in Egypt, we can explain about cooling vests and other gear that can help you.
I had to change my summer habits, like going to the beach for the day. This is my first summer on the drug, and I was surprised. Had no clue it was that difficult to be out in the sun. But I choose to stay positive and just amend my lifestyle. So, I start my outdoor activities after 4 pm when the sun gets cooler.
Great idea. You have the idea! Also, I should point out that as you're reading other people's posts, keep in mind that 30 years ago there were no meds at all, and twenty years ago there were drugs, but they were nowhere near as good as some of the new ones. So you will hopefully do better than people who have had MS for a long time.
When you're watching Dr. Boster, be sure not to miss the ones about medication. I don't know how your healthcare system works, if you can choose your doctor or your medication. A lot of people are on Tecfidera, and a lot of them do well. But a lot of doctors now are starting the newly diagnosed off with stronger medications like Kesimpta or Ocrevus because studies have shown it to prevent progression better.
There are a lot of medications for anxiety, so don't be afraid to talk to your doctor if you are feeling too sedated or fuzzy from the Cymbalta.
Come back often and let us know how you're doing. Ask lots of questions and just hang out. 😊
nice to meet you ...no you don't have to change for you are still the same person ...love and happiness .lots of giggles and laughter are great meds ...hahaha....we do go thru some changes but i bet you have had them already ...my main thing is i can't get hot or i just kind of melt and get kind of brain stupid but everyone is different so you just have to watch and see what affects you but again you have already noticed things ...like i said earlier just live your life and watch for what affects you ...remember everyone is different ....remember you are still alive and the same person...loads of love and much happiness....laugh a lot with giggles for it does feel good and makes others laugh with ya...
Probably the most important things that have worked for me are to exercise daily, avoid processed foods, especially processed meat products. I never eat bacon, sausage or things along those lines. But you have to do what works for you. I take some supplements, but I chose to get off my dmt’s in 2016, again a very, very personal choice that I don’t recommend for anyone else. It just works best for me. Good luck and please keep in touch with us!
hi and welcome. This is a great place to learn, for great laughs, and for much needed support. We all understand and “get it” Dr. Aaron Boster has a YouTube channel that you should check out
What a long time before you got answers! 😱In regards for things to stay away from, I couldn't say! I have carried on with my normal diet, though my husband is making more homecooked meals with vegetables just so he can lose weight and get healthy! He isn't overweight! But, I do like the soups he makes.
With the heat & sun part, if you have to go out when it's really sunny, maybe take an umbrella so you're not directly exposed to the sun. There's cooling vests to help keep your body at a comfortable temperature.
And no, you don't have to step away from life! If I have the energy, I'll see my friends, spend a day playing boardgames with them, and maybe go out and see other people! I know there's an older gentleman who likes to have a chat with me when I see him.
If you don't have pets already, maybe get a dog, or an animal that needs exercising. When I had my dog, I used to walk her everyday! It was in the evenings, to stop us both from overheating. She loved me more than she loved my husband, but that was possibly because I would hook her leads onto the handles of my electric wheelchair, and I would go to the max speed (4mph) not far from our home on our way back, and she loved it.
Like others have said, speak to your neurologist about the side effects of your medication. They may put you on a different medication, or prescribe something to counteract your symptoms.
I actually have 4 dogs what can I say, we r a family that loves dogs. They love me the most coz I do make my mindful time with them.
The more the merrier 😁❤️
Hello and welcome.
You should stay away from anyone who claims to have a miracle cure, especially if they want lots of money.
Greetings l0things. Welcome to the community. I remember early on the sun feeling like kryptonite to me. I know I limited my outdoor time. Eventually it stopped affecting me . It did take a couple of years. I would sit on my porch daily for for about 30 minutes or so. Not going out wasn't an option. I had to take care of business. People will take advantage of your situation. You have to keep moving. Physical therapy is definitely helpful. Exercise as much as you can. Remember we are here.
That is one of the telltale signs: not being able to tolerate heat!
Stay away from aspartame!! Anything with aspartame in it - trust me!
Stay away from heat, stress, and get plenty of rest. How do they know you've had it for 25 years?
Welcome. Heat and sun if it affects you (even a fever!) MS is so different for everyone that you should continue to live as normally as you can.
Hi! Welcome to the group! Yes, heat can really affect MS. It was worse for me early on, but I’ve been much better the last few summers and have been able to enjoy the outdoors. I really think eating well and exercising is what has made the biggest difference for me in managing MS.
Sorry you've joined a club no-one wants to be long to.
As you are very newly diagnosed it is a steep learning curve for you and the internet is awash with all sorts of hope peddlers preying on vulnerable people - misleading them about special "MS diets" and all sorts of other rubbish. There are many reputable and legitimate MS organisations around the world which have websites you can learn about MS from. Stay at least 100 mouse clicks away from websites promoting special "MS diets", or that MS can be cured with worm medicines and other sorts mis- and dis-information.
As your English is clearly very good, there is an extremely good online course developed by the Menzies Institute for Medical Research and the Tasmanian University which starts in just a few days (on 9th September) and would be worthwhile for you to do. It is free, runs for 6 weeks, and will give you a good understanding to help you at what is a confusing and stressful time for you and your family. Because it is online you can do it at any time of the days which suits you (so yo cna fit it around work hours), and it was developed for people with MS, their families, carers, allied health professionals, nurses - in fact anyone who wants to know more about MS. Plenty of people on this forum have done the course, and there's actually now about 40,000 people around the world who have done it. As a small research centre Menzies and UTas don't have the staff resources to run it continuously, so if you miss this course, the next one won't be until about March 2025.
ms.mooc.utas.edu.au/course/...
The good thing about being diagnosed these days is that there are plenty of effective medications available and many people manage to live boringly ordinary lives. The same habits recommended as healthy for everyone, such as plenty of vegies and fruit and exercise and keeping stress levels down can help your body cope better with MS.
I hope you feel welcome to explore how unique each symptom is as we are. I had a long time before I was diagnosed. I am determined to explore how the health field can learn from us. There are many trials and misconceptions out there. We need like you to journal and let health professionals learn from mistakes. If only certain doctors or states provide all professionals to keep aware of UNDERLYING CONDITIONS THAT POINT TO ACCURACY RATHER THAN MISDIAGNOSED AND DAMAGE TO US PHYSICALLY AND EMOTIONALLY. Keep tracking and seek many opinions from the experts.
Keep seeking support with your options for RRMS. I HAVE PMS, I keep and compare ALL TESTS . I look for doctors that specialize and keep your system checklist.
Hope you find the courage and faith to TRUST YOURSELF with support.😇
Welcome to the group that Noone wants to belong to
Welcome to our group!😀 Leslie
Welcome 10things! It sounds like some of the other members have been giving you really good advice. I just wanted to let you know how welcome you are with this group. Feel free to ask any questions that come up.
Welcome to MS. I was diagnosed late in life after many years of odd things happening much like you. The things I find I need to stay away from:
Heat: used to love laying at the pool, but now the sun sucks the life out of me.
Alcohol: I find I am a cheap date now, definitely must be careful with intake.
Activities - I fatigue very easily so I have to plan what I need/want to do each day.
The hard things to accept for me - realizing I needed a cane and using it.
Realizing I needed to move to the next step, using a walker around the house.
I have a Scooter (hot wheels) that I use now for outdoor adventures, it and a lift on the back of my truck have given me freedom.
Don't stop living life, there are thing that you can use to help you keep moving forward.
Best wishes,
Eileen
Welcome, 10things. I am behind here, so please excuse my tardy reply. I understand the 'low key scared.' A new diagnosis was scary for me too. Give yourself time to adjust & accept it.Dr. Boster helped me so much! As cats and cars said, he posts useful videos on YouTube. Being rural here, I learned much from him.
We are glad you are here. Prayers for you going up from the southern US.
carolek572CommunityAmbassador
Welcome to the forum, 10things ! Glad that you have found us! You could look at mymsaa.org for more information regarding ‘ms’. I look forward to hearing more from you. Keep Smiling! 
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