Newly Diagnosed a few days ago - My MSAA Community

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Newly Diagnosed a few days ago

mina444 profile image
17 Replies

Hi There! I'm 22 and doctors have diagnosed me with MS just a few days ago. The waiting time to get in with a specialist is 3-6 months! I am doing a steroid treatment now to reduce a lesion in my spine for the meantime. I was happy to find a forum to get support and know I'm not alone. If anyone had any important lifestyle changes or eating habits I should take up (especially as I wait for treatment) please let me know. Thank you!

17 Replies
carolek572 profile image
carolek572CommunityAmbassador

Welcome to the forum, mina444

There is a lot of different diets that you can do. Many of them are discussed in this forum. What I would suggest is to eat as healthy as possible, get enough sleep and incorporate exercise into your daily routine. You can look at mymsaa.org for more information.

I look forward to hearing more from you. :-D

mina444 profile image
mina444 in reply to carolek572

Thank you so much! I have been looking around that website.

carolek572 profile image
carolek572CommunityAmbassador in reply to mina444

You’re welcome, mina444

Keep Smiling :-D

rjoneslaw profile image
rjoneslaw

Welcome to the group

There is a lot of helpful information on the site. Everyone including myself has posted some helpful info and tip on the forum.

kdali profile image
kdali

Welcome! There’s a massive list of lifestyle options, many are opposing theories, and none will “work” for everyone. Four that seem to be universally accepted as helpful are sleep hygiene, meditation, sunshine/healthy vitamin D level, and daily exercise. You’re not alone!

BlondFerret64 profile image
BlondFerret64

My chiropractor suggested not eating dairy, wheat, or sugar. I feel much better by eating well and exercising frequently-stretches/movements every morning and mild workouts/modified yoga 2-3 times a week for 30 minutes. Fresh air & sunshine, spiritual time, and interacting with friends & family as often as possible-phones(text, face-time), and computer(email, Face Book/Twitter) all help me.

Frances_B profile image
Frances_B

Welcome to the club that no-one wants to join. Most importantly, your life is not over - MS now has many drugs available to help keep it under control and many people diagnosed in the last decade are able to live pretty normal lives - finish uni, travel (when there's no COVID to screw things up!!!), work at jobs they want to, have families, etc.

My best advice to you is to get your information about MS from the many websites run by reputable MS organisations around the world - see the links at the bottom of this comment. Don't get your information from social media sites, and especially stay away from those sites and organisations promoting special diets which supposedly "fix", "heal" or "overcome your MS - the "evidence" for these is all selectively chosen to support whatever theories each self-appointed diet guru want to promote. It is always good to cut out junk food but that applies to everyone whether they have MS or not, and you don't need to cut out gluten or dairy or meat or saturated fat unless you have a proper medically diagnosed problem or allergy to those things. msbites.com/multiple-sclero...

You don't need to "de-tox" from heavy metals or mould or any of the other crackpot stuff you may come across on the internet unless you have a proper medical diagnosis - and I don't mean a diagnosis from an "alternative health practitioner". You do need to develop a very effective BS detector as there is a lot of absolute crap out there on the internet and plenty of hope peddlers and snake oil cure people more than happy to try and part you from your money.

In mid-September the next running of a brilliant free course about MS will fire up again - it runs for six weeks, is totally free, and when it first launched in 2019 it was, based on student feedback and reviews, the No 1 course at that time.

ms.mooc.utas.edu.au/

Many people here have done this course and will confirm that is it so worth doing.

Links to reputable websites:

nationalmssociety.org/What-...

mstrust.org.uk/

ms-uk.org/

mymsaa.org/

ms.org.au/

Just because an organisation is not in the country where you live, it does not mean that the info on its website is of no use to you - some sites have really good info on some topics and others are better on others, so make use of all the resources available so that the knowledge you acquire is factual and supported by scientific evidence and is not social media garbage. Good luck.

mina444 profile image
mina444 in reply to Frances_B

Thank you so much!!!

Frances_B profile image
Frances_B in reply to mina444

Glad it is of some use to you :)

Here's another couple of links to very useful resources

ucsfhealth.org/education/ev...

ods.od.nih.gov/HealthInform...

There are many people who unfortunately get sucked in by the stuff they find on the internet and social media for all sort of things that are claimed to have amazing results for whatever ails them. Even some of the really crackpot stuff can be made to sound feasible, but dig a little deeper and do some checking from other sources and you'll find that the so-called "evidence" just doesn't stack up, isn't actually evidence, or doesn't even exist (Cayce's battery and Tao patches are a case in point...... :( ).

The articles on the two links above should be mandatory reading for anyone who has access to the internet, and then maybe there wouldn't be quite so many people having their hopes of "cures" falsely raised or being parted from their hard-earned for sheer quackery. It's a really good idea to start developing a very finely tuned BS detector right now.

greaterexp profile image
greaterexp

I'm sorry for your diagnosis, but you are in a great place here for information and support.

twooldcrows profile image
twooldcrows

welcome ...nope you are not alone on this ...you can share or just read what others say ...this is a fun place with some great people at different stages of MS ...so feel free to talk about family ,pets and vacations or what ever and if you know any good jokes....love and much happiness....

mrsmike9 profile image
mrsmike9

Welcome! Stay away from Dr. Google as that will drive you nuts and scare you! I was diagnosed in 2014 and even from just then, there are so many more meds out there. If the first one doesn't work, don't lose hope. My third was the charm.

This group is a very diverse family. Some recommend things but nobody here is a doctor so try things if you want and not if you don't want. My only tidbit of advice is write down things you'd like to talk to your doctor about. There is nothing worse than waiting forever to see them and after you've gone, realizing you forgot something you were going to bring up!

Feel free to laugh, cry, share stories and "funnies". We accept all!

TDonahue58 profile image
TDonahue58

Intermittent FastingSupplements such as Niacin and Magnesium

Focus on eating real food only

Limit Sugar and Catrbs

Plenty of Exercise/ Weightlifting, doesn't have to be heavy weights but don't baby yourself

Research MS on Social Media

Check out The MS Gym

Also, shift.ms and get yourself a Buddy

Research Stem Cell Therapies, tdcs.com and the PONS Device

Stay Strong and Focused

#MSSucks

rjoneslaw profile image
rjoneslaw in reply to TDonahue58

that's great advice

in case you want to check out the MS Gym go to "themsgym.com"

they have a free group on facebook and youtube but the paid membership is more structured they have trial memberships thats how i became hooked and started telling the group about it.

I found out about the group from one of the MS magazines because they had endorsed the program

Also on the home page you'll see the free tab check that out it has free exercises. the gym gives you pdfs like that along with a video. The pdfs you can use if you dont want to keep watching the videos for that exercise

Since I've been doing the gym I have improved and my doctors have told me to keep doing. My doctor and my pt has started telling their patients about it.

When I was at one of my pt session we did one of the videos and another session I had to teach the pt a couple exercises I do the from the gym. Each exercise video tells who the exercise works and you'll get educated about the exercise and the muscle being worked out. He has names that help you remember the exercises ie the Michael Jackson - pelvic tilt, Shakira Shakira hip don't lie- hip movements

sashaming1 profile image
sashaming1

There are several diets that reduce internal inflammation that may help. E.g. The autoimmune protocol (AIP) diet is a relatively new, food-based approach to eliminating unwanted inflammation in a person’s body. It’s a diet that’s thought to help heal your gut to reduce inflammation created by autoimmune conditions; How Diet Helped Creator of Wahls Protocol in Personal MS Journey: The Mediterranean Diet is also supposed to be good; Against All Drains / Paleo Diet.

anaishunter profile image
anaishunter

Welcome. There's an overwhelming amount of information to digest when you first get diagnosed. Take your time. Use this forum to ask questions, any, really.

Anything that helps with reducing inflammation will help - from diet, exercise to avoiding stressful situations, as said in prior post.

Many of us live a mostly normal life. Just have to learn to be more tuned to your body and respect what it needs - rest, good food and exercise.

JTZES profile image
JTZES

So you were diagnosed by your primary care physician? Did they do a MRI to verify that you had an actual exacerbation going on?You need to find a good nurulogist that can work work out a good plan for which DMT for you to be on.

I would ask the nurulogist when you find one to have a spinal tap to confirm that it is MS.

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