I feel like no one understands

A forum dedicated to the younger people living with MS reflecting their unique concerns.

I feel like no one understands

Postby meem » Thu Jun 23, 2016 11:53 am

I was newly diagnosed with ms at the age of 23 after losing most of my vision in my right eye. The diagnosis didnt come as a total surprise to me because the first doctor I saw for my eye said it could be ms. However, now I'm at a situation where my parents and family dont think its as serious of an illness as it is and I dont know how to explain it to them without making it seem like I'm just telling them the worst possible cases. I understand that ms is different for everyone but they think that because its different for everyone that it isnt that serious for me because steroids can just fix them right up (they have been talking to a family friend that is a neurologist) and I'm just being a pessimist.

I'm also feeling quit alone because I dont know anyone and have never met anyone (to my knowledge) that has ms. I guess what I'm trying to say is that I'm writing this here because I want to feel like someone understands. Since my diagnosis not a day goes by that I dont think about ms and read about it. I know its not healthy to do that but this uncertainty is making me anxious. Feeling like an old lady at 23 is certainly not where I thought my life is headed.
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Re: I feel like no one understands

Postby lyndacarol » Thu Jun 23, 2016 3:37 pm

meem wrote:I was newly diagnosed with ms at the age of 23 after losing most of my vision in my right eye. The diagnosis didnt come as a total surprise to me because the first doctor I saw for my eye said it could be ms. However, now I'm at a situation where my parents and family dont think its as serious of an illness as it is and I dont know how to explain it to them without making it seem like I'm just telling them the worst possible cases. I understand that ms is different for everyone but they think that because its different for everyone that it isnt that serious for me because steroids can just fix them right up (they have been talking to a family friend that is a neurologist) and I'm just being a pessimist.

I'm also feeling quit alone because I dont know anyone and have never met anyone (to my knowledge) that has ms. I guess what I'm trying to say is that I'm writing this here because I want to feel like someone understands. Since my diagnosis not a day goes by that I dont think about ms and read about it. I know its not healthy to do that but this uncertainty is making me anxious. Feeling like an old lady at 23 is certainly not where I thought my life is headed.
Welcome to ThisIsMS, meem. We are glad you found us; we certainly understand. You are NOT alone – we are good listeners.

The family friend, a neurologist, should be able to explain the situation to your family – NO ONE can predict the future course of your MS. Of course, we hope it is mild (or even invisible, called "benign"); but no one can know how your case will go.

Your diagnosis is so new – it is expected that you will feel bewildered and anxious at first. But since you have reached out to new friends who understand, I think you will manage this whole new situation just fine.

By the way, because nutrient levels are often low (or even deficient) in people with MS, I wonder if your GP (or any doctor – even the neurologist who is a family friend) has tested your vitamin D level (with the "25-hydroxy D" blood test), your magnesium level, or your zinc level. Have you had testing for a possible vitamin B12 deficiency? When you have blood tests, it is a good idea to request your own copy of the test results, so that you have the actual test result numbers. I am especially interested in your vitamin D level – in January, when I was tested, my level was frankly deficient at 24 ng/mL. If you can get your Vit D test results, would you share them with us?
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Re: I feel like no one understands

Postby meem » Mon Jun 27, 2016 8:01 am

Hello,

I've had a few blood tests before my diagnosis but I'm not sure what the actual levels were since I didn't think I would actually end up having ms. I know its silly but I just thought I was young and healthy and shouldn't really worry about the possibility of having ms. I will ask my neurologist about my nutrient levels in my next appointment. So far I'm not on any meds or a special diet and I think that's gonna change in my next visit to the doctor.
Thank you for replying to my original post. Its comforting to know there are people around that understand.
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Re: I feel like no one understands

Postby ElliotB » Mon Jun 27, 2016 12:05 pm

Hi and welcome to TIMS, and know that you are among friends.

Although I am a lot older than you, I could have easily made your post almost verbatim.

Look at this situation as an opportunity to make new friends who, if you are selective, will hopefully understand. This is also an opportunity to learn more about yourself and become a stronger, more independent person.

A service or emotional support animal can be extremely beneficial! As will a good diet and lots of exercise!
Last edited by ElliotB on Tue Jun 28, 2016 12:49 pm, edited 1 time in total.
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Re: I feel like no one understands

Postby littlestbabie » Mon Jun 27, 2016 3:51 pm

I’m really sorry your family is having difficulty understanding the details and facts of your diagnosis; that can be really difficult! I was diagnosed this past January at 23 years old as well. I’d had symptoms for a few years, namely body parts experiencing long-term numbness and flashes in my vision. It can be really hard to deal with, especially when you’re feeling alone or isolated. It can be really difficult to wrap your head around your diagnosis, but when your family isn’t being supportive that can make it worse. Maybe you can have your own neurologist sit down and talk with your family at your next appointment? The best person to fill them in is you of course, but if they’re having trouble believing or understanding the details of your diagnosis, it’d always be great to have medically-professional back-up! It sounds like your family friend who is a neurologist is sugar-coating things or simply doesn’t have the best mindset to be explaining a very complicated illness to the family of someone who has that particular illness.

For me personally I had a lot of different concerns about my family’s reaction: My fiance ended up being kind of sad but resolved, as was my mom, step dad, and grandparents. I was the most worried about my dad, because his mom (my grandmother) had MS, and she experienced a really severe case of it. He was in denial at first because he didn’t want to see me suffer through what my grandma had had to deal with later in her life, but after I explained the disease more thoroughly and brought him along to one of my drs appointments he was a lot more supportive and wasn’t nearly as willfully ignorant about the whole thing. It could just be that your family is kind of in denial because they want the best for you, and a diagnosis doesn’t fit their idea of how your life was going to go, either. It can throw a lot of people for a loop!

My diagnosis was definitely a surprise, and I can totally empathize with you feeling like an old lady! When I take all my pills and vitamins every morning, I always feel like an old lady too. But we’re not old ladies, we’re young ladies who are also diagnosed with MS! your diagnosis doesn’t alter your age and if you’re determined it doesn’t have to alter your activities, either. Try to be more optimistic, and spend some time doing some activities that will make you feel young and happy, and don’t let all the MS-stuff drag you down. Just appreciate every day that you’re not being affected by your MS, and don’t prematurely take yourself out of the game just because of a diagnosis.

Feel free to message me anytime if you need to talk about anything!
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Re: I feel like no one understands

Postby meem » Mon Jul 11, 2016 10:30 am

Your post made me feel a lot better about my situation. Knowing that someone my age is going through the same thing and is doing well is very comforting. I guess my family friend is trying to sugar coat the situation for my family. My family is supportive but they don't understand how serious it is. They basically think that every once in a while I'll wake up with numbness in my arm or leg and I will take steroids for a few days and it will be all better.
If I may ask in what ways has your diagnosis effected your life negatively? I know it isnt the end of the world to be diagnosed with ms but I would like to know the negative aspects of it because it helps me remain sane knowing what to expect (possibly since everyone is different). For me so far I've only had blurry vision in my right eye (that I know of) and its been 4 months and the vision isnt back even after steroids. Also, what medications are you on? is it just vitamins or are you taking anything else? I havent started taking any medications yet.
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