MS Diagnosis Story
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- Опубликовано: 7 сен 2024
- Figured there is not much more to say about Mavenclad...you all know I love it! So here is a bit of my story. How I came to get my diagnosis and the sysmtoms I’ve experienced. Also stay tuned in my channel for some more videos that are to come! I’m going to talk about the emotional journey of coming to terms with having MS, and I want to make a video on DMT’s and how it’s difficult to choose (especially when family members don’t think you should use any DMT’s).
Mild...the opposite of severe is mild. Lol it came to me after.
“I call it eye poop” 😂 Lol, I love that. Thank you for sharing your story with us.
not sure if you guys cares but if you're stoned like me during the covid times then you can watch pretty much all of the latest movies and series on Instaflixxer. Been watching with my gf lately :)
@Nixon Ari yup, I have been using Instaflixxer for since november myself =)
Thanks for sharing Sarah.
I can’t find your emotional video mentioned in the video, have you been able to post it yet? I got my MRI done 5 days ago and showed several lesions so definitely going through that emotional roller coaster right now ❤️
EmilyAnne I haven’t made the video yet. I can try to get it done this week since I now know it’s in demand. Stay strong and know that it’s okay to not be okay with the diagnosis of MS. It takes time to come to terms with it.
Sara Savidant thanks, I just got officially diagnosed yesterday and it was definitely unexpected. Please don’t stress to complete the video though! One thing I need to really work on is boundaries and when to say no to keep stress down so I sure don’t want to increase another MSer’s stress levels either ❤️
EmilyAnne here’s the link to the video I just posted. Hope it helps. ruclips.net/video/vpRYlzBd5Fc/видео.html
I could definitely relate to your story ! You're a naturally lovely woman
I thought MS symptoms remain for weeks and months and progress before going away…so I don’t understand when ppl say I have had symptoms showing on n off for yearssss
They usually come on abruptly and last for anywhere between a few days and 8 wks. Some people have symptoms that linger if the brain damage/lesions are bad enough. I’ve been lucky and don’t really have residual symptoms. It also depends on the type of MS you have. Progressive MS you don’t really recover and only get progressively worse. With relapsing remitting MS you have attacks and then times of remission when you aren’t having any more lesions being made.
well. i have a question about plegridy. i don’t want to feel sick and actually i am just afraid of side effects. but my country just doesn’t provide more efficient drugs for rrms... i would like to hear your opinion about plegridy. and i totally confused about your family ms situation... now scared to hell actually to have a children 🤯
Полина Юртаева I first want to say that I never intended my experience to scare or freighten anyone. Nor did I want to leave anybody second guessing their decision to take Plegridy. I was just wanting to share my story, in hopes that it might help others. It’s one thing to read about side effects on the drug, but its an other thing to hear someone’s personal story. I hoped showing my raw experience would normalize others who maybe felt the same way. For as bad as I felt on Plegridy there are many people who love it and tolerate it well. Just like Mavenclad (the drug I’m currently on), I seem to be tolerating it well; Some people really have negative chemo therapy side effects, but I am lucky enough to tolerate it well. I think Plegridy is great option if you can tolerate the drug, unfortunately the only way to know is to try it. I really wish I could have tolerated it better. I chose it because it wasn’t daily, it was bi weekly which was nice. There are some Facebook groups you should join. There are a lot of people who tolerate Plegridy really well, I unfortunately wasn’t one of them. And over all I feel like it’s more serious possible side effects where ‘safer’/less scary than a lot of other drugs. I agonized over which medication to try, and can completely relate to being afraid of the side effect. My children are the main reason I am willing to try any drug. I wanted to show them how to face fears, and believe me they saw. I would cry before doing my injections and they saw me struggle with the negative side effects, but every time I was due for my next injection I would do it. I always told them it was so I didn’t end up like my mother. I wanted to be strong and healthy, so even though the drug(s) is/are scary it is worth it.
I don’t know what to say about the family link. I do know that as I told drs about my family history it definitely swayed them into thinking my optic neuritis was caused my MS and no other medical condition. But others have said that it is extremely unusual for a family to have that many members who have MS. I do know of several other families who have high rates of MS in their families. Having said that, I can honestly say that had I known I had MS before having children I don’t know what I would have done. It is heart breaking to think of my children being diagnosed with it. My brother has had children after he was diagnosed. I think it is a very personal choice. And it is important to remember that MS is a much more treatable/tolerable disease now than it ever was before. And science is always working towards cures/new treatments. I also don’t believe in living life in fear of ‘what if’s’. I believe life is meant to be lived and each trial we face is only to foster our growth. I am still scared my children might get it, but I’m doing my best at being proactive in ensuring to avoid as many possible risk factors(eg. they take extra vitamin D, as low vitamin D has been identified as a possible risk factor). My husband and I even talk about moving to a tropical country because Canada has such high rates of MS, and if environmental factors play a role in developing the disease then perhaps moving would be best. Ultimately we decided to stay in Canada partly because the disease is so common finding top notch care for it is easier, and we wanted to be near family for support if my disease does progress to the point where I’d need help. We did move about 2hr away from our families to an area that is more temperate and has less scorching summer heat, but family isn’t too far away should the need for support arise. Anyways, it comes down to what the risk benefit ratio is to you. Whatever you are comfortable with. As with most of life’s major decisions, it’s never easy. All you can do is do what is right for you in that moment.
Sara Savidant i didn’t mean at all that your experience will determine my choice! but thank you. I am from Chelyabinsk. It is South Ural and pretty much same weather as in your country, but we have more winter months 🤷♀️ i suppose. Well i asked about plegridy because i didn’t really try any medicine and scared as hell to start. I have a very very anxious personality. And i am afraid that shots will bring me in the sea of depression under depression because i hate the feeling of being sick. Father of my husband got ms after vaccination and had only few ‘foci’ (google translate. don’t really know right word) when was first immobilised, and he tried lots of different ways to train, healthy diets and chinese medicine and so on, i lived healthy instead of 2 years as doctors told for almost 16. people who were diagnosed with him and went on drugs got immobilised almost after 4 years. so his experience was like this. but i got 60+ old flare places in my brain and two small active after half a year and also i don’t have inflammation in my spine cord, and all big flares gust gone without traces. so i don’t really understand how it works. i don’t have any issues with my health only Herpesvirus almost always active since start of diagnosis. And here it is not like in Canada, all doctors i have met scared me of fast immobility just in two years time. And i still have a very strong and strange feeling that all the flares in my brain caused by herpesvirus activity.
I asked about plegridy also because i am an food allergic. Actually not only food. Almost on everything my body reacts in different ways. Insects bites always like a large red areas with 2-3 weeks at least to be healed up. And same comes with bruises. So i am afraid that injections will cause lots of ugly and uncomfortable things.
And about children. My mother genes have predispositions to neurological diseases, but no-one in our family before got something so serious but here comes ecology environment in Chelyabinsk- there were at least 2 nuclear accidents for past 50 years. And also my mother lost my biological father during first 5 months of pregnancy. So i think i got jackpot with all things to get something like ms😂)) I scared of my future child being diagnosed too, but still think that possibility is very low, because on my husband side there were no cases with neurological diseases before his father one. For me actually most important thing that i might be not able to be good mother for my baby and that he can come across having an immobilised mother before his adulthood. And this what scares me most.
But thank you very much for sharing your thoughts with me!
Is optic neuritis always a first symptom
Not always. My mom and brother never had it. It is common however. I think the correlation is more that if you have optic neuritis is usually caused by MS, but not all people with MS will have optic neuritis. So ON=MS, not MS=ON. But I’m no expert and that just speculation. I haven’t done research into it.
Your family members need to stay away from gluten.