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    Alty's Avatar
    Alty Posts: 28,318, Reputation: 5972
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    #1

    Feb 21, 2019, 05:40 PM
    My son has MS
    Hi all, old and new. Long time no post.

    I thought I'd reach out for a bit of support, and advice. A month ago we found out that our son (20 years old) has MS (Multiple Sclerosis). He's in the early stages, has only had one flare up so at this point it's not even called MS (because it's a singular flare up, not multiple), but 100% of patients with his scans, get MS. So the diagnosis is MS.

    Right now we're reading up on this disease, finding out all we can. He's now on Blue Cross because the medication he'll need to go on is $30,000 a year. Blue Cross won't cover it until he has a second flare up or his next MRI shows more scarring. So right now we're playing the waiting game. It's very odd to be hoping he has another flare up, or his scans get worse, so he can get the medication that will help him lead a better life.

    So I'm wondering if anyone on this site has any experience with MS, any words of wisdom to share as we embark on this journey? I know very little about it, my son is the first person that I personally know with MS. It doesn't run in either of our families. Ask me about cancer and I can talk your ear off, but MS is a mystery to me, and how to help my son deal with this diagnosis and live a productive happy life, is also beyond me. So if anyone has any insight, I'm all ears and ready to learn.
    talaniman's Avatar
    talaniman Posts: 54,045, Reputation: 10852
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    #2

    Feb 22, 2019, 10:19 AM
    I have no experience with MS, but every parents nightmare is something bad happening with their kids, no matter the age. You may as well have it yourself because you will go through it with them, but I suspect you know all that already, and no doubt you will have as much love and support, and strength no matter where this leads. I wish I had something wise and profound to say, but I don't, but trust me on one thing, these adverse challenges and bad days make the good days even sweeter, and believe it or not cement the bonds between you even closer. So see this for the CHALLENGE that it is that makes you ALL stronger, and closer, and have no fear of whether you can deal with this. You certainly can and will. I have NO doubt.

    I just hope this helps my friend as you begin this journey into the unknown. Prayers for you all, and the strength to endure.
    tickle's Avatar
    tickle Posts: 23,801, Reputation: 2674
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    #3

    Feb 23, 2019, 07:43 AM
    Hi Alty. I am still doing personal support work in homecare and have one or two MS patients in my weekly schedule. I cant offer any medical advise but can easily tell you that each one of them has a positive happy attitude, are treated well by the healthcare system and carry on normal active lifestyles, even one in a wheelchair who is 60 or so; one 75 who travels extensively. They and I talk freely about their medical condition, so I know from an ascetic standpoint they are not worried about living with MS permanently. Quite frankly, Alty, I was diagnosed with MS so many years ago and waited for symptoms to appears but to this day have not had any. That was 30 years ago I was diagnosed. I hope your waiting game doesn't 'wait' too long. He is an adult and hope he is handling this well; he has a good mom to support him.

    Tick
    J_9's Avatar
    J_9 Posts: 40,273, Reputation: 5644
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    #4

    Feb 23, 2019, 09:43 AM
    Alty, Iím so sorry to hear this news! I canít say I know anything about MS, but I have known several people with it. All of them led full and vibrant lives. One of them passed away recently at the ripe old age of 85.

    Im sure you have reached out for a second opinion?
    Alty's Avatar
    Alty Posts: 28,318, Reputation: 5972
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    #5

    Feb 25, 2019, 12:10 AM
    Thank you everyone. One thing we lucked out on is our neurologist. He's a specialist in MS, only works with MS patients, so Jared is in very good hands. Right now we're playing the waiting game, waiting for him to get on meds that should help tremendously. But in order for him to qualify for the meds through blue cross he has to be worse than he is. He goes for another MRI in April, and if his scans are worse, he'll be put on the meds.

    I made the mistake of joining an MS support group online. Didn't sleep for a week afer that. I can tell you that if you ever have MS or a family member is diagnosed, stay off the internet, and stay away from any so called support groups online. They should call them "hey, let's scare the crap out of the new person by telling them all the horrible things that can and probably will happen". Ya, not at all helpful in any way.

    Jared is taking things very well. I think the fact that he's not feeling sick (other than the one flare up he had that led us down the path to finding out this diagnosis) is causing him not to worry too much about this. Frankly it's hard to look at my big strapping young man and think that he has a disease because he's healthy right now. One thing I have learned is that MS is very unpredictable. So now I'm on high alert all the time, which I have to stop. If he gets a headache I wonder if we have to see his neurologist. If he complains of pain anywhere I worry. Every sneeze, every cough I worry. I really have to cut that out.

    Our neurologist has said that with meds Jared can lead a very normal life. It's a matter of finding the right meds that work for him. Also, sadly most of the meds are not long term solutions, as they're really not great for you, and can cause a lot of harm long term. Jared is on Vitamin D (which was suggest by our neurologist and supposedly very important for MS patients), and I've been doing a lot of reading (Doctor gave us a huge book about MS), and I'm trying to learn all I can about this disease. Really don't know much about it, I've never known anyone that had it, other than Annetter Funicelllo and Montel Williams (neither of whom I know personally, lol)

    Right now we're taking day by day. He's young, he's strong, and we caught it very early, so I'm hoping he'll be able to lead as normal a life as possible. Just so hard when it's your child. Tal you hit the nail on the head, I really wish it were me, and I feel like it is in some ways. Heck, it's worse than if it were me, a million times worse. So far I'm not a big fan of 2019.
    J_9's Avatar
    J_9 Posts: 40,273, Reputation: 5644
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    #6

    Feb 25, 2019, 10:08 AM
    It sounds as though Jared is I need great hands with the doctor he has. May I ask what symptoms he had that prompted this diagnosis? Just out of curiosity, because Iíve only met people long after they were diagnosed.
    Alty's Avatar
    Alty Posts: 28,318, Reputation: 5972
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    #7

    Feb 25, 2019, 09:10 PM
    J9, it was a simple eye ache. He said his eye hurt when he moved it. So I took him to our family doctor, didn't even think it was bad enough to see an eye doctor. Our family doctor said off to the eye doctor you go. So I booked an appointment, she did a few tests, said he needed steroid drops and he'd be fine. We were just about out the door, prescription in hand when she stopped us, called us back for one more test, one she doesn't often do. That test led to her sending us to the hospital to see a specialist. The specialist said rest and we'll see what happens. Weekly appointments for weeks, and Jared started to loose vision in his right eye. He then lost almost all his color vision. That's when the specialist became concerned and sent us to the neurologist. Both the eye specialist and neurologist ordered an MRI, but a few days before Christmas Jared had another appointment and it was even worse, so the neurologist called in a favor and Jared got on Christmas Eve for his MRI. The rest is history.

    From minute one after seeing the eye specialist she mentioned MS as a possibility, but she wanted to see if it got better. It didn't. Even now he's not 100% in his right eye. He's missing some color vision and vision vision. It wasn't until he lost color vision that they rushed the MRI though.

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