Yes, MS is different for every person but it must have taken a lot to live with this MonSter
How long have you been living with this MonSter?
You answers will serve as a hope for all those newly diagnosed with MS
How long have you lived with MS ? - My MSAA Community
How long have you lived with MS ?
Written by
FindingAnswersMaccy
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56 Replies
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Over 20 years, diagnosed about 4 years ago.
I have had it about 28 years and I was diagnosed 7 years ago. I never thought I had anything wrong until 8 years ago then MRI showed too many lesions too count....thinking back i had it since I was 20 at least.
Been 27 years since I was diagnosed. Had some ups and downs, but still upright and driving with an AFO on right foot. Been pretty stable for ten years now 👍🙏😉 Ken 🐾🐾
Probably have had for close to 20. Diagnosed almost 15 years ago.
Jesmcd2CommunityAmbassador
Are you doing a survey or something?🤔
No, I am not. Newly diagnosed person like me cannot find truth in google & all we get their is answers that's scary. Their is absolutely crap out their. I only want to know what is the reality of MS. I am from Asian country where MS is not known. Many neuro here are clueless. I have no Understanding about MS or how does one live with it.
Apart from asking questions here and educating myself I don't have a choice. Living with a disease without even knowing people who have lived it or hearing from them is scary. I ask questions because I am looking for answers that will at least show me a path of where I might head
I got it, I'm sorry! And it is scary, I understand.. and the key word you said there was 'might' because no one's MS is the same.
Someone gave me some advice on here when I was 1st DXd. He said, when you wake up in the morning and everything is still moving, it's a good day!! That just always stuck with me.
Did you check out MSAAs site yet? 🤗💕👻
I did, MSSA site says very small number of people become disabled but google says otherwise & that is exactly why I have been asking questions here
Here are a couple of other great sites for you FindingAnswersMaccy ,
nationalmssociety.org and msfocus.org they are both trusted MS site's!
And Google lies!! 😂🤣 Ok I can't say that, but check out the other sites 1st! And of course ask your questions!
Just remember, my MS, her MS, his MS and your MS is always going to be different.
Not everyone will become disabled! Some ppl have no symptoms at all! And lead a very normal life! 🤗💕👻
Good move, ask questions lots os them & if you are not clear, ask again and again
Thank you Royce. I follow ur posts too. It’s not just motivational but a lot of education too
carolek572CommunityAmbassador
I have been living with 'ms' officially since 2006, but unofficially since 1996 or so, FindingAnswersMaccy 
Never trust google...😑 I was diagnosed in 2001. One doctor told me to "purchase a wheel chair now because I would definitely need it." Never went back to him & I still don't need it! No longer working or driving. ..but still walking. Every case is different...😁 stay strong, you can do this. 😄💖👍
in reply to 2littletime
What a d*ck...
2littletime in reply to
My thought exactly, but being a "Lady" I couldn't say it out loud. (I know my mama would be so proud!)
wolfmom21fl in reply to
that is far too nice and I know i wouldn't have been so..LOL. MY GOD!
over 20 years
I was a "young" 47years old, in a Battered Woman's Shelter,when I was given a "list" of what's wrong with me... I have seizures from TBI,of course fibromyalgia and much more... The doctor told me that I would probably be totally bed ridden by age 50. I'm pushing 68yrs old, I use the Rollator much more these days and I have two wonderful Medical Alert, Assist ,Therapeutic, Service Animals that are the best help ever, I pray and pray. I fall, I sometimes bounce back, I have many bad days,yet I have good ones as well, I am Not bedridden. Just goes to show you that Doctors do Not know everything. We are all different, yet we are the same since we have all learned to be strong and fight... This is Our world. Ask questions, listen to those who deal with this daily... Stay strong
Be blessed...
FWIW, I was diagnosed at age 25, way back in May 1994, 26 years ago. I started injecting Avonex in September 1997 (23 years since starting tx).
26 years !! Am 32 now. How are doing physically now ? Which DMD are you on currently ?
I was diagnosed in Sept 2013, but looking back i must have had it since the late '90s.
Since late 90s ?
So are you now relating the current symptoms to back then ?
No. I had an episode in 1996 where the side of my face went numb. Feeling came back eventually took about a year. Then tingling sensations started right after and have continued to this day. Then foot drop started in 2012.
16 years
Diagnosed in 1996. Still working full-time, driving, and walking. Been on one DMT or another since 1999.
39 years since I was diagnosed. I walk, drive and do volunteer work. You can do this!
No....there wasn't anything available yet! It was almost 10 years before I started on
Betaseron....when it was first released, it was by a lottery draw only...can you imagine????? The medications have come so far since I was diagmosed!
hope a cure I found. HOPE !!
We all do!Hope for a cure!
Aah, yes the MonSter. Next month will be 25 years since diagnosis.
25 years is a long time. Has it hurt you much physically ? Any suggestions you have for me will be helpful
FindingAnswersMaccy Hey! I wouldn’t say that it has hurt me much at all physically. When I was diagnosed, I was only 22 years old and still living at home with my parents. I went on to get married and have a baby all within the following couple of years. I continued working full time until our baby was born and when he was a year old I went back to work part time. I was originally prescribed Avonex, which I took for a few years, then I was switched to Rebif. I’m not sure what you may be taking, but I just had an MRI and everything was good. Nothing new and that’s how it’s been for years and years. I think I’ve been on it for about 13 years. My main symptom is fatigue. What are your symptoms and which DMT are you on? And, if you don’t mind, what were your symptoms that led to your diagnosis? Mine was optic neuritis.
I had facial numbness. MRI showed 1 T1 & 1T2 lesions. Spine MRI was normal, VEP was normal however Oligoclonal bands presence was 1-3.
Neuro says let’s wait so I am currently waiting for my next MRI
I know it’s MS
Am just waiting for the diagnosis
I wish you all the best and hopefully, sooner than later, you can start a treatment that’s just right for you.
I will as soon as I finish my second MRI
I was diagnosed 10-11 years ago.
I was diagnosed on 9/9/14.
I was diagnosed in 2005 on my 50th birthday. I probably have had it since I was a teen. I had mostly fatigue as a teen, especially after going to the beach all day long, I lived in California. I also had numbness on the bottom of my feet from time to time over the years and tingling down my back. It wasn't until 2005 when half of my face went numb & my doctor sent me for an MRI that I found out it was MS. I still don't have too many symptoms other than numbness, fatigue, tingling in my arms & legs. My balance isn't all that great anymore and I have cognitive problems such as recall and short-term memory problems. I no longer work but I can walk, drive and do almost anything. I have been on 4 different medications over the years. It is very important to be on a DMT(Disease Modifying Treatment) to help slow the progression of MS. But remember everyone is different and their MS symptoms are differnt.
14 years since diagnosed, 4 years trying to figure out what was going on. All was manageable until about 4 years ago; now steady decline, loosing skill/mobility and independence. But still fighting!!
are you not on any DMT currently ?
No. I am that "rare" one. Have developed allergies to 2 different DMT drugs; am very susceptible to PML; and now with Covid my severe development to respiratory infection has taken everything off the table. for the moment. Just focusing on fighting battles as they come. Covid has really interfered with my options/treatments. Hopefully 2021 will provide more opportunities. My doc is really good, very aware of cutting edge meds; therapies; and a great listener.
I wish you the best. Keep us posted and keep that fight on
25 years.
I was only dx'd about 5 years ago but I have it much longer. I look back when I first showed symptoms and its been over 30 years. shortly after my daughter was born I started showing symptoms. I was passed from one doc to another at one of the top teaching hoispital clinics in the countries and i never got an answer.. I finally got a CT scan when I started having major cognitive issues in 2013. At that time I was on state medicaid and the docs refused to fight with them to get an MRI. I had to wait 2 more years to get that MRI when I became eligible for Medicare under SSDI and then was able to get other testing done as well. By that time I had over 150 lesions in my brain and the neurologist kept asking me to walk for him.. turns out he was shocked that I even could walk because of the number of lesions I had in my brain. Since then I have been on a few different meds and am now on Mayzent. My MS has progressed to Secondary Progressive and I wonder all the time what it might be like if I had been dx'd earlier in my life and started treatment years and years ago. It's sad and I feel for people that go years with no dx and then after many years of tests and run around finally find out that they have MS.. Never stop searching for answers. There is no cure but answers are out there to help you live your life in relative comfort. What works for one of us may not work for you but there are more treatments today than ever before and there are new ones coming out all the time.. read as much as you can about each one to make your best choice and try to talk to people that have taken a drug you are considering. Tysabri was magical for me but my JCV titers spiked and I had to discontinue it.. i loved that one and my lesions actually started to heal while i was on that. Aubagio was disasterous. School is still out on Mayzent as I have only been on it a few months.. I had started in the beginning with Tecfidera with no changes one way oir the other.. so you need to just work with your doc to find the right treatment for YOU
Thank you for that note, I hope the current DMT works for you
40 years . No MRI machines back then and just Steroids. DMTs came out 15 or so years later. Started using rollator 2004 , Stopped Injectables in 2010 , just were not working for me anymore and I was getting more Disabled . So now I have a powerchair and a rollater I use a night , also to get to my car. I don't drive much anymore but I can for short drives . I get really tired from throwing my rollator in back seat . I don't drive in the winter , it to hard to clean my car off these days so I just park it at my sons house .
It's been quiet the life so far , I have many things to be thankful for . I will remain positive .
elle61
I was diagnosed in 2014 but have had it for a lot longer. I can think back to times when I had symptoms but had no idea what was causing it. Just thought I was tired. Really started to have more severe symptoms in 2011 but the doctor just thought it was bulging discs. Wrong. That's the way this disease does.
I was dx in 2006 but I think I have had it longer.
I was dx in 2008 but had it since at least 1990
I was diagnosed over 20 years ago triggered by my 2nd bout of optic neuritis. I've worked through it for 10 years, doing the newest and best DMT's. After many years of DMT's I became intolerant of them according to my Neurologists, yes more than one, at once. So I stopped. I continued to get worse, and went essentially comatose. Brain fog so dense...
I realized if I didn't eat anything, I didn't lapse into brain fog every day. I juiced fruits and veggies for years to combat the brain fog. Progressed to real food, still primarily fruits and veggies, making sure to stay away from anything processed. Eventually got better as a result. My neurologist told me that I was one of the lucky ones, that "grows out of M.S. progression for no known reason after how many years of really bad M.S." Been 5-6 years without a relapse. Getting better. After 5+ years of needing a cane, now it hangs on the wall, like a trophy, having gotten over it. Still getting better, just have a long list of M.S. gifts I acquired along the ride, that I can't shake. My advise, eat healthy. Stay away from processed foods. Never stop pushing yourself, no matter how hard it may seem.
i was diagnosed 8 years ago and misdiagonosed to 10 years prior,just kept at it.it was a relief!
34 years since diagnosis. No significant symptoms.
dxed at 2004 but i figure had way before but you know how it goes we all know but can't get anyone to agree....going good with taking infusions of Ocrevus....love and much happiness...
40 years--diagnosed in 1980 though symptoms were starting up some years before that. I can still walk in a limited way, using a rollator for walking outside my apartment and sitting in a wheelchair most of the time. I actually walk (with or without the rollator) about 1500-2000 steps/day according to the pedometer I have.
Probably 20 years, but I wasn’t diagnosed until 4 years ago. I had heat intolerance a few years before I developed optic neuritis. After that, weird things happened every few years, then every 8 months.
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