mri | Patient Talk

Multiple Sclerosis Support

As you may know one of our objectives when we set up this blog is to provide a place for people with multiple sclerosis to share their tips and advice.

This is very important for people undergoing tests for multiple sclerosis or who have just been diagnosed with MS.

So last week we asked the members of our Facebook page MultipleSclerosisTalk to share their answers to the following question “Have you any advice for somebody who has just been diagnosed with multiple sclerosis?”

We have shared a number of the comments below. It would be great if you could add your thoughts and ideas in the comments box below.

“I’m 26 just got diagnosed 2 months ago and the doctors told me that they were shocked I could even walk because my MRI looked so horrible, so me being the Irish red head that doesn’t listen to anyone went straight home from the hospital and started walking! I have lost close to 60 lbs on my own. I HAVE MS BUT MS WILL NEVER HAVE ME!”

“So, YOU have MS…it doesn’t have you. Your attitude will make all the difference….you can choose to be handicapped, or a person with a physical challenge… Choose to smile and live the life you are given…it could be worse.”

“Have a positive attitude , very important . Drink plenty of water and keep moving , lots of walking ! Don’t let it bring you down , be a fighter you can do it ! Good luck and God bless ”

“Go to the MSAA website (mutiple sclerosis association of America)…. They give the best nonBiased advise…. It has been 12 yrs since diagnosis, I’m 42, and have a 5 yr old son. Keep up the fight! No matter what!!”

“Learn sign language to help with the hand tremor and the depression because it gives you something to do”

“Do your research but remember no 2 people are the same. Don’t stress because that makes it worse. You will be ok, take it easy on yourself & breathe.”

“My daughter has found Yoga to be a tremendous help emotionally and physical”

“Every case of MS is unique. Be careful when reading and researching to not compare yourself to everybody else. You may cause yourself terrible heartache and worry if you do this (as if having MS is not already bad enough…) The things that help me are to eat healthy, get plenty of vitamin D, exercise regularly, and to take my disease modifying drugs. I also have a great group of people around me for support. It’s not a battle I have to fight alone. I hope this helps someone out there ”

“Immediately get into hydrotherapy! I don’t care what the symptoms are physically. The whole reason I’m not in a permanent chair is because of the pool. Also look into the Swank diet for nutrition. I’ve had damn near everything this f’n disease can throw at us and I’m still holding on. Internally and externally. Also, learn to laugh at this disease. Making fun of myself and having family and friends do it has been a saving grace. Trust me! Best of luck to all of us!”

” I encourage people to make healthy life style changes…be positive…start drinking lots of water… walking…decrease processed foods and increase fresh dark and colorful veggies and fresh fruits to your diet. Try to eliminate all gluten sugar and breads etc…to help with the inflammation. And start taking vitamins. A great book to read for health Is The Wahls Protocol…by Dr Terry walhls.”

So health food, lots of water and exercise seem to be key

But what is your advice?

Advice for people with fibromyalgia

As many of you know by now one of the objectives of this blog is to provide a space where people with fibromyalgia can share their experiences.

So to facilitate this we ran a Vox Pop on our Facebook page FibromyalgiaTalk. Vox Pops are where we start a conversation on the page and then share the results here on the page.

So a couple of days ago we asked our members the question “What advice would you give to a person who had just been diagnosed with fibromyalgia?”

The results were very interesting and we would like to thank everyone who took part. One of the most liked comments and one I think is very true was:-

“Educate yourself and don’t depend on the info just from your doctor.”

But also

“Take one day at a time. If it’s a bad day, be kind to yourself, tomorrow may be better. Try to be positive when you can, it stops you going crazy, and surround yourself with good people, who understand what “it’s just a bad fibro day! ” means. These things take time, but you can get there. Never lose hope”

“Stay as strong as you can and read read read up on Fibromyalgia … and pace yourself… and last but not least join groups like this one and talk to others that CAN relate. ♡”

” When you need rest, then rest! It will perk you up more than anything to give your body the rest it needs. I might go a day or two where I sleep so much it’s crazy, but I will finally wake up and feel so much better. Take care of yourself, period!”

“Sudden weather changes, it can be cold or hot. Rain, snow, etc. it can be near or far (barometric) , air and fans can be a killer and any artificial sweaters or caffeine can affect you.”

“Get regular massages! Find a therapist who specializes in pressure points.Don’t feel guilty. It’s not a luxury or indulgence, it’s necessary!”

” It will take a while to get the mix of meds right…be greatfull for everything good in yer life because that is what gets you through the bad times. Love and do as much as ya can because there will be a day you will not be able to do those things. Keep this in yer thoughts it won’t always work but it helps 80-90 percent of the time.
Laugh when you can
Apologise when you need to
And let go of things you cannot change”

” Don’t stop pushing yourself and insist on living a full life. Go to work and take full part of family life. If you ever stop, you want begin again. Take your meds, get enough rest, and for the most part, ignore the pain.”

” Dont compare yourself to another because no two cases are alike plus no one has your body! You have to pay attention to your self for your triggers, how long you can do this and that for. Finding the right meds, doctors, holistic helps more then people think. The key is you! If you know something us not right, but the doctor tells you otherwise don’t listen. You know your body better then anyone keep fighting for what you know in your heart. I learned a lot about spirit, prayer, love is easier to carry then hate. We have to heal ourselves, because the doctor’s can’t do it only manage. Please bypass the angry why me phase and start on spirit learn about your chakras. Fibro might not even be your right diagnosis research everything you can to heal your, spirit, mind, and body”

” Find yourself a great rheumatologist (they specialize in inflammatory disorders such as fibro and lupus). Educate yourself, then your family and friends! Try new things (meds, yoga, foods). Do what’s best for your body. Keep fighting and soft hugs! Xoxoxo”

“Get MRIs in the trigger point areas to rule out disc degenerative disease. Because I’m pretty positive your going to have it. I’m not convinced Fibro is an actual disease. They say i have it , all 18 trigger points, but I’ve had MRI in each location and I’ve got osteoarthritis, disc degenerative, protruding discs all or at least 1 of the above. I am pretty sure its just a name they made up for folks who have too much going on in the body to fix. This way they don’t have too.”

“You know more about your illness than a doctor. YOU are the expert not them. Also, animals are fantastic to have around”

and finally

“Don’t despair as you’re not alone “

So what would your advice be?

Please feel free to share in the comments section below.

Thanks for reading and sharing!