Multiple sclerosis awareness
We hope that PatientTalk.Org will give an opportunity for people in the MS community to learn from their peers and gain support in the battle with multiple sclerosis. As well we hope to help introduce the challenges of life with multiple sclerosis to people who are unaware of its effects on life and health.
This blog seeks to do both. It is part of our Vox Pop series where we provide a voice to people with MS and give a podium for multiple sclerosis awareness.
In this case we use one of our Facebook Pages MultipleSclerosisTalk to ask our readers and contributors a very simple but very important question:
“What have you learnt since being being diagnosed with multiple sclerosis?”
A very open yet key question for PwMS.
I have to say we were overwhelmed by the responses to the question for which I am very grateful. We thought it would be of great value to the Multiple Sclerosis community to share just a few of the comments made!
“I’ve learnt to appreciate really simple things in life”
“Everybody’s ms is different. Thankful for what you’ve got there people worse off than yourself x”
“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”
“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”
“That im stronger then i thought”
“Everyone’s MS is different, you find out who your real friends are ,do what you can do when you can do it and don’t over do it.”
“How much it can take from you and destroy, your marriage of 34yrs, job, family and friends. That everyday you need to get up and fight for what you want.”
“Don’t plan your life out! Just enjoy each day as it comes. If its bad, then tomorrow is another day. Always listen to what your body is saying xxx”
” If you need help – ASK! From someone who used to do it all I have become humble and asked for help when I need it!”
“To have more patience, nobody gets MS, but an MSer!”
“That I had been misdiagnosed for over 30 years. Seems I had symptoms as young as 16. When I would be on my feet and legs for extended lengths of time. I would get horrible muscle spasms and even lose use of my legs for periods of time. When I had my first child, my legs went into spasms and pulled to my sides as soon as the Dr put me to sleep after 22 hrs of horrific labor. He came in several times afterwards and checked my legs and walking ability. He told my husband that he’d never had that happen before. If I had anymore trouble see a neurologist. That was 33 years ago. I experienced relapses from time to time. But, was told I have Fybromalgia, osteoarthritis and degenerative joint disease. Which.and all of those I do have. But, the MS was overlooked by these other complications. My MRI showed multiple lesions my new Neurologist said. How long have you had these symptoms. I replied since I was 16 and worked a 16 hour double shift as a nurse’s aid. When I finally sat down. My legs went into spasms and I could walk for days! My Dr back then said it was sciatica nerve pressure from being on m feet so long. I suffered all these years thinking it was something else. Only to find out last July I have Ms and the others as well as Chari Malformations. Uh! Life isn’t always fair.”
“That non MSers haven’t the first idea & that being strong & having a positive attitude are the only options available. I’ve learned to appreciate the little things in life, things which pass you by when you’re healthy …. Oh & to be more patient “
“Be thankful for every day that you feel good…… live life to the fullest, and never give up or give in to the demon of MS!!! Most important. …I’m not alone on this journey. .so many are just like me.”
“Who my real friends are! And get a second opinion if the first doc you see doesn’t believe your symptoms. I actually had a doc tell me last relapse if I cant walk talk or see I dont need treatment what the?”
“That neurologists are nefarious creatures.”
So as you see it varies from the very positive to people who are in the “slough of despond”.
What now interests me is what readers of this blog think is the main lesson they are learnt from multiple sclerosis? Also which of the above comments do you find yourself in agreement.
It would be great if you could share more in the comments box below.
many thanks in advance!
tjshudo LoriBatchelor Hi, Tracy! I’m in Burnaby–I believe I went to high school with your sister-in-law. I am doing very well, thanks–all of my improvements from venoplasty for CCSVI have held and it’s been almost 3-1/2 years. Of course I wish I was “normal” but my personality never was, anyway! I have received my medical records from my neurologist who just retired. He has indicated that my EDSS score has gone from 6.5 (for more than 15 years) down to a 4 after my treatment! Not bad for somebody with S/P who was NEVER supposed to improve! I have several before/after videos on youtube. If you are on facebook, please “friend” me.
I am not totally against drugs–I just don’t believe the MS Society nor the pharmaceutical companies really have our best interests at heart–they are industries, intent on making money for employees and stockholders. I am definitely not a fan of our governments, but they are influenced by the so-called “MS experts” and lobbyists who have many conflicts of interest.
I am extremely frustrated that even though I don’t “qualify” for any of the many MS drugs on the market, I am not even allowed to try a non-pharmaceutical treatment in Canada, even if I pay for it myself. Venous angioplaty is not some scary voodoo treatment–it is done all the time in Canada–I have it in writing from the BC Ombudsperson’s office that it is a “standard of care” for kidney patients when they develop occluded veins for repetitive catheter insertions to restore their blood flow, but they won’t allow people with MS to even have their blood flow tested–that is WRONG!
Sorry, I’m passionate about this–have been following/researching this issue since I first heard about it on W5 on November 21, 2009.
Best wishes for good health–stay in touch!
LoriBatchelor tjshudo
Hi Lori. Thanks so much for your response. I was diagnosed a few years after you and yes again there were no treatments. I am very sorry for your experience with the drug study.
Well like I said before when I was not on this medication I was having 3-4 relapse a year, then on drug for 24 months I had 1 very mild one. Then stop of medication for 18 months I had 3 very strong and bad relapse. Then after those 18 months I have been almost relapse free. Do I think and believe there is a connection to being on this medication and not, YES I do.
But do I believe all people with MS would have same experience on this medication? NO all our bodies are different and the chemicals act different in everyone body, not just MS medication but all medications.
They are doing a CCSVI study at UBC MS clinic I tried to be a study patient for this but I only had 47%blood blockage and to be in study you needed 50% or more. I have spoke to many people that have gone out of our country for this treatment and it has worked for some and not so much for others.
Again I believe the problem with our condition is !. They don’t even know what causes this to happen, how can you fix something that you don’t know for sure why it happened?
2 This is the most important part for me is it is our country that is NOT PAYING FOR TREATMENTS. I believe that is because it is more of a women’s illness and it is cheaper for them to give us CCP Disability payments than pay for treatments that could help us live our life’s better be active in society and be tax paying employed people. ITS ALL ABOUT THE MONEY. You think it is money from drug companies and I can agree with that a bit but denying treatment is from the Federal Government, and I believe this is more about money than a safety issue.
I hope and pray you are doing ok? I hope you have support with friends and family that are willing to help you?
Again thanks for the response and yes we all must fight together to find a cause and cure for this crazy illness.
Oh Where do you live? I am in Vancouver Canada.
Bye for now Tracy
tjshudo I am glad your number of relapses has decreased but it also disturbs me that you believe it could only be the drugs that have reduced your number of relapses, rather than the normal progression for your course of this unpredictable condition. I know everybody is different and I was diagnosed at a time (1990) when there were no drug treatments available. I had several severe attacks, and in desperation I went on a clinical trial for an experimental drug (lanercept) that had to be stopped after 7 months because everybody on the drug, including me on the low-dose, was getting worse. When my course of relapses settled down, I was declared secondary/progressive and, therefore, never qualified for any of the drugs that came on the market because they were only for relapsing/remitting cases. I firmly believe that the pharmaceutical companies have only developed drugs for relapsing/remitting cases because, when someone goes into remission, they “believe” it was because of the drug. Someone with a progressive case is never supposed to improve so none of the drugs would “appear” to help.
The only thing that has helped me in any long-term way was venous angioplasty for CCSVI, which is not a drug, but a minimally invasive procedure, used for many conditions, and proven safe–but still forbidden in Canada for people with MS–because the MS Society wants to keep its profitable pharmaceutical funding–no treatment for progressives seems pretty discriminatory to me!
Hi everyone, my sister in-law passed this site on to me and it looks good.
So the first question was “What have you learnt since being being diagnosed with multiple sclerosis” Well first was that I did not have a brain tumor and I was not dying. Next was to take care of myself and LISEN to my body. Now like most of us this does not happen overnight. But once you learn to listen to what your body wants and needs and you take care of those things can get better. The BIGIST thing I have learnt in the past 19 years is enjoy the good days and go back to bed on the bad ones. Every day is a gift and treat it as such.
I have also learnt that most of us have what is called an invisible condition. People can not see we have limitations so they don’t understand when we hit that wall that says ok you have done enough STOP now, friends and family have to learn to listen to you when you say sorry have to go now, or no I cant do that.
The hardest part is I still want to be that person who does all those things I did before and cant do now, Or do very little bits at a time and then the whole thing can get done.
I kind of disagree with the person who was condemning the pharmaceutical companies, it is really our government that wont cover costs of treatment. I was on a drug study for over 12 years medication called https://beta.mssociety.ca/about-ms/treatments/disease-modifying-therapies-dmts/tysabri this medication has changed my life, I was having 3-4 relapses a year and then when on drug have had 1 small relapse every 3 years or so. My MS is slowly progressing but if I had not been on this treatment I believe I would most likely today to be bedridden. Why you may ask, well they stopped the medication for 18 months and during that time I had 3 very serious relapses. Back on medication I do not have relapses.
OK I have gone on for way to long, but over all I take the good days with a huge smile and on bad days don’t get negative just rest and take care of myself and things get better. Bless us all we are all very special people.
Thanks for letting me share. Tracy
The MS Societies use people with MS as cash cows to receive money from pharmaceutical companies who, in turn, exploit sick people for profit! They don’t really want a “cure” because they’d be out of work. If they actually cared about “quality of life” for people with MS these Societies would be fighting to make venous angioplasty for CCSVI available as a treatment choice instead of putting up roadblocks. In the 24 years since my diagnosis, angioplasty is the ONLY thing that has given relief to any of my symptoms–no thanks to them! I had to leave my home country for this treatment, even though it is done for others without MS all of the time.