diagnosis of multiple sclerosis

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“What was your first reaction to the multiple sclerosis diagnosis?” Please share your experience at our discussion blog!

What was your reaction of the MS diagnosis?

What was your reaction of the MS diagnosis?

As many of you know we run a Facebook page which focuses on multiple sclerosis called MultipleSclerosisTalk. You can join it by clicking here.

Obviously there are loads of uses for such a group as the whole topic of MS is very wide. People with MS use it to vent or ask questions.

Indeed one of our members asked the following question last week. “What was your first reaction to the multiple sclerosis diagnosis?” So we thought we would share it with the other members of MultipleSclerosisTalk. I have to say the results of the discussion that ensued were fascinating so we thought we would share some of the comments with you and ask you to share your story.

The most common reaction was tears. Jennifer told us “I bawled my eyes out because I was scared of the future, I was relieved to know there was a diagnosis which wasn’t terminal that made sense and finally a doctor listened to me to investigate the cause of all my medical issues.”

” I cried. My doctor asked me why I was crying. I angrily said, “ why am I crying?” This is wheel chair bound. Then I sat down, and cried a little more and she explained that it didn’t necessarily mean that at all, and the rest is history. I still work full time, but do feel the impact as the years go by. My doctor said I am very resilient. I told him, not sure to take that as a compliment or not. I know that I will have to leave my 29 year career as a truck driver within the near future, but God Willing, I will find a more grounded job. Life goes on. I do cry a lot at home, feeling scared of the outcome, but then I kick my self in the but and carry on. I am one of the lucky ones.” was Louise’s reaction.

Crista “was in the ER and I cried because I thought it was a death sentence. All I could say was, I can’t believe this is what I’m going to die from. Then “aha” because this explained the brain fog and fatigue and long naps.” So more many at least they can now explain the symptoms.

Salkly’s approach was different “My mum was with me and my first reaction to her was ‘why are u crying it won’t change anything’ and I have had the same outlook all along. I made a pack with myself on te day to love my life. I have gone back to work took my daughter to disney land done 46 mile bike ride and much more to make sure i remain sane xx”.

Fear is not uncommon of course. ” Fear!!! Still is. Not knowing what tomorrow holds. I now just received a diagnosis of lung cancer and I have NEVER smoked? Having surgery in two weeks to God willing to get rid of that and will continue my battle with MS. I am so blessed and I remain positive in my resolve to beat anything thrown at me!,,” said Gloria.

The understanding of the root cause of your symptoms was backed up by one reader who shared “1st was scared cause the nuro was looking at my MRI right in front of me and I could see all these little spots everywhere and was freaking out. Then relief cause it gave me an answer to everything that has been happening to me for 6yrs.”

For some the diagnosis is a relief because of this. “Happy. That sounds weird but the first docs believed it was my breast cancer metastasised in my spinal cord. Beyond the help of chemo I was given a death sentence. MS was great news at the time” was Susan’s comment.

And Randi said “Relief. Thought I had a brain tumor.”

Tom described the shock when he shared “Sat there dumbfounded, numb and speechless….thought for sure I had screwed my back up again and had no inkling or idea I was gonna get that diagnosis….”

Depression is a common reaction. As Jonathan shared ” I was depressed. Thought it was a death sentence. But I educated myself and have a great support system.”

“Anger then more anger and 15 years later acceptance.” was the reaction from Brandy.

Pamela was very practical ” Had my hubby repeat marriage vows so he knew I wouldn’t let him down. Didn’t even think about it. In this together forever.”.

I have to say that many of us would have sympathised with Athena when she said “What’s MS?”

So you can see there are a pretty wide range of emotions. From anger to working out how to “get on with it”.

For the next part of the discussion we would love to hand the podium over to you. Please feel very free to use the comments section to answer the question “What was your first reaction to the multiple sclerosis diagnosis?”

It would be great if you could comment on the reactions of others and even better share a few of your favorite tips for dealing with a diagnosis of multiple sclerosis.

Many thanks in advance!

16 Comments Posted on Multiple Sclerosis

Life with Multiple Sclerosis. Some tips about living with MS from People with MS.

Multiple Sclerosis Support

Multiple Sclerosis Research

A month or so ago we asked the readers of our Facebook page MultipleSclerosisTalk to share their answers to the question “Have you any advice for somebody who has just been diagnosed with multiple sclerosis?”. The results were so successful we decided to share then om a VoxPop blog called Water and Walking.

A couple of days ago we decided to follow up the blog post with another asking People with Multiple Sclerosis (PwMS) what tips they would like to share about living with MS with our readers.

The results were incredible so we decided to share a few with you. We have got nearly 500 so far so can’t include them all. It would be great if you wanted to share your ideas and suggestions in the comments section below.

Christina’s was the most popular when she said “Take a deep breath and always look forward never backwards. Times will get hard occasionally but you must be grateful for the good times. Never give up and fight for your independence and never ever give up. You got this, even if you think you don’t.” Traci supported this saying “You are stronger than you think you are”.

Laura emphasised the need to take control through research 2Research, research, research. Avoid the DMD’s because they don’t work! MS can be controlled by diet. Food is our medicine! Check out Swanks diet for MS. I have been following this for 9 months and I’m feeling great. I also take LDN and supplements. Recovery and healing are possible if you take the right road. A strong positive mindset is also key….”

Isla said “find yourself a holistic doctor”.

Jackie was very practical “Heat is your enemy. Try to stay cool. Your body will start to feel better once you cool down.”.

Sharri had lots of great ideas “Don’t feel bad for feeling bad. Keep your sense of humor. Increase your sense of humor. Join an MS / chat group, local support group and fun www.meetup. com groups.
Nutritional supplements also help you feel better and the meds to work better. Eat the fish and spit out the bones of what people say who do not have MS. Nurture and do kind things for yourself.
Know that you will have good days, great days, bad days and horrible days. ”

Like many of our readers Christina felt we should listen to our bodies ” Don’t let MS change who you are! Biggest challenge was learning to listen to my body, cognitive issues, and the MS Fatigue (which is not the normal fatigue people have) If you can learn to listen to your body, eat healthy and exercise and most important stay true to who you are and maintain a positive attitude (you may have MS but MS does not have you or define you) then you will see MS becomes more of the “Ah” that is why I feel this way or that makes sense now and can move forward. I took it as a positive when I was diagnosed (March 2012) as I honestly thought I was losing my mind (cognitive is bad for me) and I did not understand the fatigue I was having. It was a relief to know there was a reason for it and now I know what to do to help with these issues. Attitude is the key to MS success (as with any illness). I find if I keep moving I’m fine. It is when I give in to MS that I get bad. It is a choice you have to make every day if you are going to get up or let MS win. I REFUSE to give in to it. There are many days I forget I even have MS and again, that is a choice I make. Make sure your family and friends are aware that you are still you and that YOU will let them know if you cannot do something as only you know how you feel and your limitations (which you learn as you go but always try). I have amazing support with all of my family and friends. I asked them to not treat me any differently and I promised I would let them know if I needed help (which I admit is hard for me to ask for any help, I’m very stubborn) but there are things you will need to say “hey, my body does not react well if I did this, can you help”. You will be amazed by taking one day at a time, one breath at a time how well you will be able to handle your MS and live life just like you did prior to your diagnosis. Research the different types of MS and make sure you understand which level you are diagnosed. Unfortunately, there are more severe cases of MS and I pray for those with the more severe cases. So we cannot dismiss what we have but we can listen to what our body tells us and make the right choice to get up and live! Prayers as you begin learning your new path in life.”

Finally Georgia went the other way and said “Don’t listen to other people’s “advice” that don’t have MS and have absolutely no idea what you may be going through! Only you know your body, no one else does!”

So what do you think about these tips? Do you have any you would like to share? If so please do use the comments section below to add your ideas.

Thanks very much in advance.

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Water and Walking! Have you any advice for somebody who has just been diagnosed with multiple sclerosis? Check out the results of our recent Vox Pop

Multiple Sclerosis Support

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?

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Multiple Sclerosis Facts #1 – How many people have been diagnosed worldwide with MS?


How many people have been diagnosed worldwide with MS?

Share to spread Multiple Sclerosis Awareness!

How many people have been diagnosed with MS?

How many people have been diagnosed with MS?


1 Comment Posted on Multiple Sclerosis, Patient Talk

You’ve Got This – How a new social media web site called Healthline help a person with multiple sclerosis. A guest post from Jeri Burtchell


Healthline

Healthline

It was March 4, 1999 and I was driving through the countryside on my way home from the University of Florida in Gainesville. I had left my infant son in my mother’s care while I’d gone there for a second opinion, referred by my neurologist. He had been treating me for what he said was “possible MS.”

I clung tightly to that word “possible,” knowing it meant there could be another explanation. Some other reason my legs had betrayed me, leaving me nearly unable to walk. “It’s got to be a pinched nerve,” I kept telling myself, even though an MRI had revealed a lesion on my cervical spine.

“If you’re here to verify what your doctor thinks,” said the head neurologist at Shands Teaching Hospital, “then I completely agree with him. I’ve looked over your records, the films, etc. and he was spot on,” he said, almost as if we were talking about a ref’s call on an NFL game and not about my life. “You’ve definitely got multiple sclerosis.”

Then he grabbed the lapels of his white lab coat and gave a little shrug as if to say, “What are ya gonna do?” I think he meant it sympathetically, but it struck me as odd. He opened the door to leave and, glancing back, he smiled.  “Good luck with that,” he said.

I had come there by myself, sure the expert would think my doctor was a quack. In hindsight I wish I’d have taken a friend. As I drove home, fear and worry began poking at the numbness of my denial until they finally broke through. I could no longer hold back the flood of emotions.

I pulled over on a lonely stretch of two lane highway and shut off the engine. No other cars around, all I heard was chirping birds in the nearby woods. I got out of the car and sat on the hood. And I cried. Sobbing and full of mourning for a life that had just ceased to exist. I had never felt such loneliness and fear. Everything in my life had changed. Everything.

Was I going to die from it? Worse yet, was there going to be endless suffering? I had a baby who was never going to know a healthy mother. What was I going to do?

I didn’t have a computer and Google had only been around for six months. We didn’t have a support group in our rural community. I didn’t know anyone I could reach out to. There was nobody who said “You’ve Got This.”

Flash forward. Now it’s been almost 15 years to the day since I cried all alone in the woods. So much has changed. If I had the chance to go back and tell my newly diagnosed self what things would be like 15 years later, I’d have told myself to get on with the business of living. I’d be strong enough to deal with this disease no matter what it threw at me.

When Healthline asked me to participate in a video campaign to share my message of hope with others who are just facing their MS diagnoses, I jumped at the chance. What I wouldn’t have given for this kind of resource back in 1999.

So I made my video and tried to say all the things I wished someone would have told me. I emphasized that you need to take control of this disease. Don’t let anyone make your decisions for you, and learn everything you can.


It is now part of a collection of inspirational YouTube vignettes that Healthline is sharing in their You’ve Got This campaign. If you’ve been living with MS, you can share your message of hope, too. Just make a short video about what motivates you to stay positive with MS. Imagine you’re talking to a friend who just got diagnosed. What would you say? Then upload it to YouTube.com and submit the link to Healthline by clicking the big blue “Add Your Video” button. Your message will join a host of others in an ever growing collection of inspiration.

But it’s more than that. Healthline has partnered with the National MS Society and MSWorld to raise money and awareness. For every video that’s submitted, Healthline will donate $10 to the NMSS. So do something special, and empowering–and help raise money at the same time.

So much has happened since that dark day, 15 years ago. I found a therapy that works for me and I’m taking care of myself. My son is a sophomore in high school now, and the most compassionate person I know. I’ve been speaking as a patient advocate at events around the country and I’ve started a new career as a freelance writer, covering the MS News for Healthline. So many things I never could have imagined — all positive — that have come after my diagnosis.

So if you are one of the 200 people in the US this week who just heard the words, “You’ve got MS,” don’t let it be your darkest day. Just remember, you’ve got this!