I went to my neurologist yesterday to talk about which DMT he was going to put me on. He said something that really messed with my head. I've been super positive since my diagnosis or at least trying to be super positive. I looked at not being diagnosed until 58 and not having symptoms until 58 made me lucky! So many people get this at 25! The doctor stated that women that are diagnosed later in life (like me) have poorer outcomes. My response was well that's not going to be me!
I am sure he just meant statistically speaking but (in my opinion) I'm also so much healthier than your average 58-year-old! I reversed my liver disease and my T2 diabetes by losing 100 lb without weight loss surgery. Just clean eating and exercise.
Not going to lie though last night and today has been rough emotionally. I feel full of sadness.
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Szs3eb
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Welcome! There are many things that correlate to outcomes, but none can predict much. It sounds like the conversation triggered the grief process. Diagnosis and medication options are overwhelming for most of us, you are not alone!
It is understandable that you are feeling sad and overwhelmed. Although your doctor may have meant well by sharing statistics, he has no idea what your "outcome" might be. Each of us with this disease has a different path, and there is, frankly, no way to predict how anyone will do down the road. M.S. is completely different for every person who has it. Take time to do your research on all the DMT's. They all work differently and you may need to try a few before you find the right fit. Sounds like you are doing well with your healthy lifestyle. Keep up the good work, and don't let anyone, doctors included, discourage you. Best of luck.
As a 58-year-old who's dealt with MS for about 45 years but only got diagnosed in 2020, I'm going to say that he's an idiot for phrasing it that way to a new patient but wasn't quite wrong in his statement. I'm hoping that he's just confused by all the statistics that don't take into consideration that women spent decades (centuries?) being under-served by doctors. There's nothing wrong with us. We're just stressed. We're whiny. We're seeking attention. All we need is to take some tranquilizers and grow up.
There are many of us out there who struggled for years to get a diagnosis, so by the time that happened, we were in the more advanced stages of the disease. That said, I'm not seeing "poorer outcomes", at least not with RRMS. At our ages, we've experienced a good bit of life and know that it's not all rainbows and unicorns. Even without MS, by the time we're pushing 60, we have wrinkles, gray hair, and stretch marks. Our backs hurt when we crawl out of bed in the morning, we need glasses, and where did I put the car keys? Yes, MS throws a few more things our way, but we've been around enough to know that a bad day or bad week isn't the end of the world.
When my neurologist diagnosed me, he felt that I was too far gone for DMT’s and that I’d be a full-time wheelchair-user by now. Guess what? I’ve voluntarily given up driving a car, but I still mow a large section of my 3 acres. I plant a small garden, do my own housework, and deal with a large, unruly dog. You’ll find that there are many of us on the forum in the 50+ age range who don’t see themselves as “poorer outcomes”. We just move a little more slowly than we used to and maybe need some walking aids. So do a lot of people without MS. Until they carry me out in a body bag, I’m going to be quite happy with my current outcome!
Don’t let that doctor discourage you. You may find that you have to alter your routine a bit as time passes, but chances are good that you would have had to do that anyway.
Amen,, sister! Many of us were diagnosed late in life after decades of searching for answers. Diagnosed at70, (13 years ago) I've been told I was too old for DMTs, so I've never had any treatments. But I live alone on 4 acres with gardens, a few animals, and plenty to keep me busy. To Szs3eb I echo your advice: don't let any doctor discourage you! All of us are capable of being who we need to be, resilient, courageous, fulfilled -- not as we imagined, perhaps, but even when faced with obstacles, we can continue, and thrive in different ways.
Yes. As with any lover of goats, it's a long story. But currently three Nigerian dwarf does are living out their senior years here on Old Woman Farm (at Wobbly Corners).
Hey goat gal! Just saw your post which actually came at a time when I needed to hear something positive. I just turned 70 and was diagnosed about 20 years ago after having symptoms for about 10 years. I too have been very independent up to now and credit a lot of my emotional survival to my goats, horses and several other critters living on my small acreage. I’ve always been on fly’s since being diagnosed but have always avoided the subject of MS until recently having an exacerbation with severe double vision. Waiting to start specialist to see if there is anything they can do to help my vision but having a hard time with depression because the vision has really limited my activity. I’m pretty much a loner and get a lot of my emotional support from my animals,gardening and yard work. Good to hear that others are still able to enjoy their animals,gardening etc at an older age. Really scared about losing my independence now after being so self reliant for so long. I am married but my husband is struggling with age too and has never been much emotional support. Not sure why I’m telling you all of this… but it’s good to hear that are still able to do a lot of the same things I have enjoyed in life!
It's always good to hear from someone walking a similar route! A visit to a neuro-ophthalmologist may be helpful to you. It has been to me. When double vision made my life very difficult, mine prescribed Fresnel lenses (prisims in my glasses for both eyes.) As I have aged, the muscle weakness that causes the problem has required a stronger prescription but I can still do much of what brings me pleasure. I hope you too find a solution!
My neurologist referred me to an opthomologist who was supposed to refer me to a neuro opthomologist but the first opthamologist said I needed to see a specialist who does eye realignment either by Botox injections or some kind of surgery. I wish my neurologist had just referred me to a neuro ophthalmologist but they said I would have to get that referral from a regular ophthalmologist but they wouldn’t refer me to a neuro ophthalmologist, only to this other doctor who specializes in realignment. Makes no sense to me! I already have prism in my glasses. I think just the right eye from an earlier milder flare up. Even if I cover one eye I get bad headaches, pain behind my right eye and I haven’t been able to get used to the wonky depth perception 😵💫 I am having a hard time with just sitting around most of the time. I did start neuro rehab to try to help with the balance problems. Maybe I just need to be more patient. Thanks for your reply. It does give me hope!
Sometimes the first neurologist isn't the right one for you. Don't be afraid to look around and find a neurologist you are comfortable with. Ask people, look at reviews online. You need to be uplifted not brought down. It is hard enough to have this diagnosis without adding negativity.
Szs3eb You'll find many women in their 50s in this forum who have ms and are doing quite well. I'm one of them and don't let your neuro get you down. There are many DMTs that drastically reduce the risk of rapid disease progression. I was diagnosed at 52, 5 years ago. Ocrevus stopped the ms progression in its track and I actually feel better than before (no brain fog, less fatigue,...).
there are a lot of doctors that are not very much help but are more harm to us with MS ...maybe he feels that if he scares everyone then they will fight harder ...sorry about this but it sounds like you have it all under control...enjoy your life and find a specialist in MS ...loves and happiness..
I understand about you feeling sad 🫂 its a confusing time for all of us! Be thankful that you had an appointment with your neurologist so they could tell you face to face, I got a letter saying I'm clinically definite diagnosed with rrms. Well, I did get an appointment a year before with him, and my mum, saying I don't have CADASIL (the differential diagnosis), but I do have simple partial temporal lobe epilepsy and a CIS diagnosis of MS. I think it was because I was in university at that point 🤔 that appointment was in 2014, and the letter was in 2015. I'm happy I was in a house full of other students who knew what was going on with me, and then my then-boyfriend (now husband) was so supportive and everything I told him he remembered. He still remembers! He also remembers how to get me into the recovery position now that I have generalised seizures, and we laugh when he tells me how I ended up in hospital when I've had 3 in a row 🤣
I think they are just statistically speaking, because you're more fit and healthy at 58 y/o than other older MS patients! You're definitely more fit and healthy than 28 y/o me 🤣 keep going and prove them wrong! Because you don't know how strong you are until being strong is your only option 💪 ❤️
I was just diagnosed at 60. My MS specialist said she thinks I’ve had it 30 years. She gave me a great deal of hope. She said my late diagnosis made her feel that it was a mild case but put me on meds to protect me. I am staying positive and I’m glad you are too!!!! And she said a good attitude and not stressing goes a long way!
I prob had it for 30+ years prior to dx. Neuro said she expected me to be worse off before meeting me based off my brain MRI (cervical & thoracic were also not great) My take is I’ve been compensating for so long while drs said “you’re fine!” A PT I saw said I can see it (my self corrections/compensations) I’ve not had falls I can walk unassisted just not as far as I’d like or as smooth. My endurance is lacking which can be a nuisance.
I’m happy I’ve done as well as I have thus far (completely healthy otherwise-which adds to the nothings wrong narrative)
I do also wonder where I’d be if someone listened earlier. Worse outcomes? I agree w NorasMom that maybe we’ve just lived w it longer by the time someone finally calls it. A 20 yr old now will hopefully experience less disability in their lifetime than a 20 yr old 30+ years ago due to earlier recognition & treatment.
Okay, I was diagnosed at 54 with very mild symptoms, mostly invisible. I'm now 68 and other than having to use a walker my symptoms have been progressing slowly. Don't let that doctor get you down, keep staying healthy, exercise and be your best you.
Don't you want to slap bone head doctors? Understandable that his statement upset you. I was diagnosed a month after my 60th birthday. She did not educate me AT ALL, so I learned mostly from Aaron Boster on YouTube & this forum. Almost 3 years later, I still work, still drive, still do my own housework. Yes, it's a struggle, but what isn't? Live & eat healthy. You have got this!
Hey there! I say poopoo on him! I was diagnosed when I was 48! I am female as well. I was told how bad it was going to be and they to me to expect to be in a wheelchair in 5 years. To get my life in order etc.
Well I am here to tell you the doctors love to scare the crap out of you! I just turned 60 and I definitely am not in a wheelchair! I learned to be my own advocate! I went through 6 neurologist until I found one that really listened to me and heard what I was saying. The others had me so drugged up and in the hospital I was slowly dying. I gained so much weight. My teeth were falling out. My insides were failing, I was pre diabetic. I could hardly walk. If it could go wrong it did.
Two years ago I said enough was enough and like you I took control of my body back. I lost over 100 lbs, starting exercising. Made decisions for myself of what meds I would take and not take. Worked with my medical team with alternatives to pills for many f my issues.
I still have MS. Will I feel this good forever. I doubt it. But I will take this extra time as long as i can. My advice be your own advocate. Speak up and ask the questions. Write things down. Research so you know what is going on in your body. Don’t let the doctors set your mindset into a death sentence because it doesn’t have to be that way. Feel free to DM if you need someone to talk with. tlcnvegas2003@yahoo.com. Tammy
This brings back to my first neurologist, in 1985. He came into my hospital room, cracked a few jokes and then said I was positive for MS and walked away. A few years later, after I told him I was reaching a point where I felt safer he said, "My dear, you are living under an axe and it could drop at any moment." That is when I sought out a referral to a different neurologist. Best decision I ever made.
That is exactly where I ended up! Two have retired so I am on my third one at the clinic. They have all given me all the time I need to talk and ask questions. Good luck!
After having MS for 40 years, what I've learned is that there is a whole lot more that they don't know about MS than what they do know. Everything that has ever helped me I have discovered myself.
You have a positive attitude, Szs3eb , and you are proactive in your health management. Perhaps your doctor was just trying to be as truthful as they can be. I would ask them to give you information on how to continue with being in the best health as possible. You are successful in your approach. Please continue. You can certainly do your own research by going to mymsaa.org Keep Smiling.
Just remember no 2 people's disease is the same. Medications have really improved over the years as well. Keep on keeping on one day at a time. You got this!
Wow! If that was my doctor I would be tempted to slap him! I am 64 and was diagnosed 9 years ago. I am only now and then using my cane. Aside from being exhausted and some brain fog, I'm not doing too bad! Tell this idiot not to dig your grave yet and he has a terrible beside manner!!!
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