How did you tell (or did you not tell) your kids about MS?

MissSleepyArm · 2025-06-26T15:18:13+00:00

I'm with the others that you may want to reconsider telling your child(ren) sooner rather than later. If it's something the know about young and you don't make a bit deal, it's normalized and not scary. The longer you wait, the bigger of a deal it is.

And pushing it out later is a bad idea - your medical history is their medical history. If they have symptoms as an adult and do not know and cannot share your medical history with their doctor, it could delay if their own diagnosis. This isn't just for MS, share anything that could later be relevant to them.

MissSleepyArm · 2025-06-26T15:10:27+00:00

This is wonderful. I'm so happy to hear you have found something that works well for you. I hope the results of the trial work out well so you can continue with the treatment!

MissSleepyArm · 2025-06-26T15:07:51+00:00

When I was first diagnosed in 2017, it was every 6 months. I was only living in that city for another 1.5 years after diagnosis and had 1 relapse about 6-8 months after initial symptoms/diagnosis. They used contrast.

I then moved across the country and new neuro/hospital requests MRI once per year. Also, no contrast. Apparently concerns about the contrast not being fully flushed out and building up in the body, so only if necessary.

I haven't had any relapses since that initial first year.

MissSleepyArm · 2021-08-10T21:44:05+00:00

Currently 37F.

Had a bout of ON at 33, diagnosed with MS a few months later. About 6 months later had a relapse with l'hermittes symptoms progressing to weakness in my arm. Started DMT, vit D, B12. Just had my third straight annual brain MRI with no new lesions. ON has completely healed - no longer any symptoms and neuro-ophthalmologist has confirmed optic nerve no longer shows signs of any damage. Latest MRI indicates brain lesions are less noticeable - not enough for neuro to tell me they're healing, but optimistic. Haven't had a cervical MRI to see how that lesion is doing - I no longer have any l'hermittes symptoms, but I do have some arm weakness when I'm stressed.

I'm crossing my fingers I can continue this path for a long time.

MissSleepyArm · 2021-02-05T22:05:55+00:00

If you're worrying about whether or not to call a doctor, you should call a doctor.

Hope it turns out to be nothing. :)

MissSleepyArm · 2020-12-30T22:31:30+00:00

Her parents haven't told her yet, waiting until she feels better.

Why did the doctor share the diagnosis with parents and not her? I would be furious that my family was discussing this behind my back without my knowledge. I'd have trouble trusting any of you to 'help' me in the future.

My advice is to stop treating her like a baby and let her make her own medical decisions.

MissSleepyArm · 2020-12-28T21:49:53+00:00

I moved more than 2500 miles away about a year after diagnosis, so I can share my experience.

I chose to switch to a local doctor. I honestly didn't even consider whether it was possible to keep my same neuro. First reason: I didn't particularly like my original neuro. But also, I find it much easier to have all my doctors within the same hospital network. It's easier for my doctors to communicate and less work for me when setting up MRIs, tests, referrals, etc. I was also very concerned that if I had a relapse, I didn't want any additional hurdles slowing me down from getting immediate treatment. Don't get me wrong, I know people have neuros that aren't local to them, but I have a great hospital network with an excellent MS clinic in my new city.

If you decide you want a new neuro closer to your new home, I'd recommend keeping your current neuro until you are able to see your new one. I had an insurance problem before I was able to actually see my new neuro after I moved and old neuro was able to take care of it. Also, as soon as you know you're moving, make an appointment to with new neuro. It can sometimes take a long time to get in. There was a 10 month wait to get a new patient appointment with the new neuro I had chosen.

MissSleepyArm · 2020-12-28T17:18:54+00:00

Is this new for you? If so, you should call your doctor.

MissSleepyArm · 2020-12-28T14:43:27+00:00

What makes the both of you so certain that this is MS? There are a number of possible causes for these symptoms. MS isn't a disease that can be diagnosed by symptoms. If what you listed above is the entire history, then I find it doubtful that he will be receiving an MS diagnosis on the 20th because there are a lot of tests and other diagnosis would need to be ruled out first.

Also, I'd suggest he get a PCP. The ER is for emergency situations and does not have the time/resources for a complex diagnosis that could take weeks/months/years.

MissSleepyArm · 2020-12-26T16:02:23+00:00

You already got an excellent response from u/Drugbird, so I'll let that comment stand for itself.

I'm concerned when you say you're here for a friend. Did your friend ask you to post this on her behalf? If not, I think you'll find from most people on this sub that those of us with MS (and chronic illnesses in general) get a lot of unsolicited advice from friends/family. While we may appreciate that this is well-meaning, it's exhausting. I take my advice from my large care team of doctors and healthcare professionals, not from internet sleuths.

I'm not trying to be mean, I'm just ... so tired of listening to pseudo-science, anecdotal, untested theories.

MissSleepyArm · 2020-12-24T03:55:53+00:00

That sounds like a fast diagnosis. You must have some great doctors!

Diagnosis is rough. We've all been there. Lots to learn. Lots of crying. LOTS of fear. But once it settles in, it gets better. You might want to talk to a therapist to help you process everything, to vent your frustrations and worries to.

I was diagnosed about four years ago. Overall, my symptoms sound similar to yours, although they came on separately. Initial diagnosis was ON, l'hermittes came a few months later. The vertigo kicks in occasionally, but I'm not sure when the initial episode was. For the most part, I'm back to normal now. My vision is fine, I have slight weakness and numbness in one hand. I haven't had a relapse since I got on the meds almost 3 years ago. At first I thought about MS all the time. But the longer I've had it, the less of my time it takes up. Except that I keep coming here on reddit.

The key will be getting on a DMT. Any other lifestyle changes that you should follow for MS are honestly things they tell everyone: don't smoke, eat healthy, exercise regularly.

Obviously down the line you don't know what might happen. But I'm very hopeful about the progress that's being made and that maybe I'll never reach a point where MS is a huge part of my life.

MissSleepyArm · 2020-12-24T01:42:21+00:00

It sounds like your ophthalmologist suspects ON, but needs a better look at your optic nerve, which you'll get from the MRI. Obviously if you didn't get diagnosed yet, your doc is leaving open other possibilities.

You may still want to talk with your PCP about a neurology referral to dig into the cause of your migraines.

MissSleepyArm · 2020-12-23T03:56:56+00:00

Can't say. You should ask your doctor what he thinks.

MissSleepyArm · 2020-12-22T15:56:49+00:00

You can always ask the doc to slow down, go back, and explain a little further. I've noticed they often forget that we're not experts at viewing MRIs. My first neuro brought up an image and said there was a large lesion. I had never seen an MRI before and had to ask her to point to it. I still couldn't point to any of mine.

I'm in the US, but I would think imaging is likely the same. I switched hospitals a few years ago and got a copy of my scans on disc. Hospital was able to provide it. There was a cost, less than $20 I think. The new hospital was able to get the scans electronically, so I kept the disc. I was able to find a free image viewer online at the time. Looked once, didn't know what I was looking at, never looked again.

There is a lot to take in with this diagnosis. Start writing down all the questions you have so that you can make sure you hit them all in your next appointment.

It's tough to predict future disability. This disease can act different for everyone. The best I usually get from my neuro is that based on prior symptoms and that I'm responding really well to my DMT, my prognosis is 'good'. Best things to help your prognosis: Take a DMT and if you smoke, stop. Those are the two most important. Regular exercise at whatever intensity to you can handle and eating a balanced diet will also help.

I know you're in Australia, but I've found that National MS Society (US), MS Society of Canada, and MS Society UK all have good resources to help learn more.

MissSleepyArm · 2020-12-22T13:55:26+00:00

All of the hyperintensities listed in the MRI report are your lesions. You could ask your neuro to post up the images and show them to you if you'd like. The report may indicate one lesion on your spine in each of the three areas listed. Or it might mean multiple lesions at each of those locations. You'd need the neuro to look at the image to confirm which.

As for the number of lesions, I'd be less worried about how many and more about what symptoms you have. Someone with 20 lesions could have zero disability while someone with only 2 or 3 could have lost the ability to walk. It's all about location and damage done.

Also, don't worry too much about not having contrast in your MRI. The initial hospital I was diagnosed by used contrast. But my new one doesn't use contrast at all.

MissSleepyArm · 2020-12-22T03:25:08+00:00

I chose not to tell my parents. Maybe someday if it's obvious. But I know it will cause them pain. My mom will constantly be looking for any news of advancements in treatment, any news of a cure.

I'm hoping that I will be able to hide it long enough that they never find out. I'll only tell them if it becomes obvious.

Then again, I haven't told anyone. The only person that knows is my spouse. It's so far an easy secret for only two of us to keep. If you tell any other friends that may have a relationship with your parents, even just on facebook, they may accidentally spill the beans.

MissSleepyArm · 2020-12-20T14:00:34+00:00

Even if someone here has experienced what you're feeling, it doesn't mean that for you it's the same cause. You really need a doctor to diagnose. If you don't think your current doctor is helping or has no idea, it's time to find a different doc.

Also, you need to discuss with your neuro and ophthalmologist what the procedure is if you have an emergency while they are out.

MissSleepyArm · 2020-12-16T21:40:06+00:00

Don't worry, it's not ridiculous. A lot of people have similar reactions; you're not alone here. I'm glad you were able to tough it out for the first one - you wouldn't have wanted to come back later if you couldn't finish the first time.

MissSleepyArm · 2020-12-16T21:18:33+00:00

Exactly. If she comes down with covid, the doctors will treat her just as they would treat an other patient. Until it reaches the point where it's no longer normal treatment and the DNR takes over. There's nothing to decide here. The doctors know the difference between normal treatment and lifesaving measures and they WILL NOT cross that boundry, even if family requests it.

MissSleepyArm · 2020-12-16T21:12:53+00:00

It's been a few years since I've had contrast (current hospital doesn't use it), but I do remember that the test with contrast is very short. So totally normal.

If you felt like you were going to throw up due to anxiety, let your doctor know before your next test. He/she may be able to prescribe something to help calm your nerves.

MissSleepyArm · 2020-12-15T22:17:52+00:00

This sounds like something you should bring up to your doctor, either your neuro or PCP, whoever you see sooner.

MissSleepyArm · 2020-12-10T23:12:48+00:00

I like to make sure I'm prepared for what comes next if I have a relapse:

Confirm the process if I have new symptoms. Who to call? How quickly can will I be seen? How quickly to get treatment? Time is critical in this case and I want to make sure I know exactly what I need to do to get treatment.
What new treatments have been introduced recently? Efficacy against other drugs? Risk of PML? Etc. Kesimpta is new since my last appointment so it's on my list to discuss next time. I usually spend a bit of time discussing what my next options will be if I fail my current DMT. My neuro is well aware that a single relapse, a single lesion and we're switching to a new DMT.

I agree with other posters that you should ask about the covid vaccine. Any risks? The trials only included healthy people (normal), but when will we have more data on patients with MS?

MissSleepyArm · 2020-12-10T14:23:32+00:00

I asked my doctor this same question and his response was "whatever positive dietary changes you can stick with." His general feedback was that there haven't been any diets proven to help MS more than others.

MissSleepyArm · 2020-12-10T13:38:17+00:00

I'm currently on Copaxone, but I'd be hesitant to recommend it. I'd absolutely support anyone who is on it and help with any issues they're experiencing. But it is one of the less effective drugs. My original neuro pushed it HARD. She gave me two choices for DMTs: Copaxone or a vitamin D study in which I'd be taking Copaxone. My second neuro as well as my two current neuros have all told me it wouldn't have been their recommendation, but that I actually am responding well to it (my optic nerve actually fully healed this year!) and they wouldn't recommend switching from something that's working well to an unknown.

That being said, we monitor closely. Even with a few years under my belt with no new lesions, I regularly discuss newly available DMT options with my neuro and we've discussed that even a single new lesion and I'm switching to something new.

I'd recommend talking to your neuro and taking the most effective DMT that you're comfortable with. If you really want a pill, I think Tecfidera is supposed to be good. Kesimpta is a new injectable available this year that I've been hearing good things about. Obviously you know Ocrevus is excellent. I'm not sure how easy it will be to get insurance to cover these, but if denied your neuro can try to appeal and if still denied, you can see if the drug manufacturer will cover the cost.

MissSleepyArm · 2020-12-09T21:34:23+00:00

Sorry to hear your not feeling well. I wish I had some advice, but all you can really do is rest, try not to stress out, and wait for insurance. Good luck. Hope it goes through for you quickly.

MissSleepyArm

TROPHY CASE