EPTMultiple Sclerosis - Page 2
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PhoenixVoid
Canada32754 Posts
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_fool
Netherlands684 Posts
On February 09 2017 21:39 Liquid`Zephyr wrote: sister-in-law has ms. shes stayed largely healthy since her diagnosis a decade back and still lives a normal life. keep your friends and family close. best of luck. My cousin has MS. She has been fine for most of the last 10 years or so. Had 2 kids, and devoted her life to doing the things she loves. MS is a bitch, and learning to deal with the unexected will be tough, but don't give up on things! | ||
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fluidrone
France1478 Posts
On February 10 2017 02:04 endy wrote: Very sorry to hear that  Wife has a lupus so I know how painful life can be with these fucking autoimmune diseases. A very healthy diet and sleep patterns as well as medical marijuana have been very helpful. Good luck and stay strong! i'm waiting for the other shoe to drop :/ i posted this as a "just in case" + Show Spoiler + just in case i get banned from posting on tl for unrelated business i'm waiting for the other shoe to drop In this proverbial context, ^ this expression in english means (+ Show Spoiler + and this is my biased use of the word, i could careless about how other people might use it in their context " that was some bad f cken news.. so what's next?, worse news? or life goes on news?"... You posted here. So what's next? ..........> a "Lost in ms" thread? ..........> a "my wife saved me and it is high time i made her an honest woman" thread + Show Spoiler + Getting married ..........> an "inside Opisska the live experience" stream? As for me, i don't cuddle: Stay + Show Spoiler + with us Stay alert .. stay strong .. remember to watch that movie innerspace (or like i would prefer calling it: inside me) > http://www.imdb.com/title/tt0093260/ where dennis quaid is in a spaceship inside martin short's body while he is awake.. or watch memento paying close attention to the "sammy jenkins" part of it, re-cutting yourself while playing it for it to make (the most) sense to you.. and then + Show Spoiler + make up and type in a text document your own "sammy jenkins" story (speech to text apps online are easy to use <3 ) a text/story that you will learn/tell yourself over and over in your head.. reshaping it at will (on a whim) nervously/anxiously awaiting further news as the years go by quicker and quicker each year/second. i humbly suggest it starts something £.. something .. like:+ Show Spoiler + i love the smell of the sun on a mountain peek, i love the wind fueling me .. i am alive but do write your own  continue to write, to communicate to other human beings (whoever they are, whatever the form of communication , never* stop! ).. even when the typoes you will make will in turn make your lines unreadable.. i'll try my best to decipher.. translate and you'll check and send an "ok or a no.. and ill get back to re translating if that is a no until you say ok and that will mean i heard you.. you were understood ... there is a cell we live in every day.. our body, it can be a golden palace of a cell, a cell made of iron bars or of leaves and dust, always a house of cards for everyone in every case, and it is all up to you what you want to do with it! When those days come, when you want nothing to do with the world "anymore" (more like "temporarily").. there will be some of those harder than ever days! ... Get someone to save you.. you are entitled to ask every human being to save you once or twice maybe even three times.. those bad feelings will become fewer and fewer, just remember that all degenerative deceases are waiting for you to cut that line, then their mission is done, that is their purpose, to cut the line of communication , don't allow them this satisfaction, never! if you can't see yourself in someone else, you will leave us, and never come back! i saw both my grandmothers do it to themselves/their husbands/kids.. there are neater ways to go believe me! In any case, make the most of what you are given in life and i hope to see you on the other side man, when we both have had our allotted hopefully very long long long and fruitful run, until then, i'm a closeted  Edit: On February 12 2017 01:41 opisska wrote: "how you get treated depends on which doctor you hit and which country you live in - but it really doesn't make that much difference, because if you had to chose, you couldn't, because data is lacking." Agreed! | ||
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LastWish
2015 Posts
He quit smoking, doesn't drink much and exercises more regularly. So far he is doing really good and doesn't seem to be affected by it that much. Hopefully it goes well for you too. GL | ||
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opisska
Poland8852 Posts
The internet also brings terrible things, where you can read about all the bad things that can happen to you and also about the fact that science isn't really that clear about the whole thing, so essentially how you get treated depends on which doctor you hit and which country you live in - but it really doesn't make that much difference, because if you had to chose, you couldn't, because data is lacking. And it also brings one more good thing and that is people to talk to. I know it sounds like a cliche, but every positive response in this thread has made my life better. | ||
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opisska
Poland8852 Posts
I am almost surprised how calmly I am taking it now. I cried a lot when I was first confronted with the reality, but now it really seems like another chore to deal with more than anything. If there is an emotion to speak about, it's mainly anger with the way how world is and how we all just live a big lottery with our bodies where we are only waiting to be told in which way do we lose. | ||
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fluidrone
France1478 Posts
On February 22 2017 03:16 opisska wrote: In case anyone is remotely interested + Show Spoiler + in updates,I just came from the specialist and yep, I have MS for sure, it seems to be a pretty clear cut case after inspecting the MRI, the spinal liquor and the symptoms. I am starting glatiramer acetate in two weeks (needs to be approved by the insurance company, but I was told my case is straightforward). It's gonna be a pain in the ass, because it's injections and it needs to be kept cold (so trekking's gonna be challenging) but from the available choices it seems to be best, as Interferon is contra-indicated for me due to my other medical conditions and the new pills I can't remember how they are called require constant supervision due to side effects, which would mean even larger changes in my lifestyle than the injections. Also, GA seems to be the least damaging to my body overall - I am probably gonna have some ugly patches around injection sites, but at least it's probably not gonna kill my liver any time soon. I am almost surprised how calmly I am taking it now. I cried a lot when I was first confronted with the reality, but now it really seems like another chore to deal with more than anything. If there is an emotion to speak about, it's mainly with the way how world is and how we all just live a big lottery with our bodies where we are only waiting to be told in which way do we We are interested! + Show Spoiler + anger? Anger to change it? make it more fair? Or just anger? Welcome to step 4  A lottery? mmm yes.. i guess. + Show Spoiler [more] + If i try to "balance" rationalize it in my head (is the lottery fair or unfair in your case?) .. then i think you will agree that (as you said yourself) .. you have the best of everything already (maybe we all need to be shown just how great that initial lottery ticket is? instead of apathetically waiting throughout our lives tirelessly for something else to "happen"). i do another version of that, i expect everything i have built to crumble and shatter... For so long have i been doing this that i am "comforted" by this never ending flow.. all this wonder and awesome available that can flow through me towards the "other" (+ Show Spoiler + the "not me" (everything and everyone that is not me) My grandfather used to sum up things miraculously well, for instance (as applicable to this issue) he used to say: "life is not complicated, you get served your allotted share and you fight for more.. but then nothing should lead you to excess, everything should be experienced/done in proper measure.. never get habits, never get those or they will kill you" (ps: the only "habit" my grandpa could never kick was his wife, he died a year after her, at that point he couldn't care less about the rest of the world because she wasn't there with him). i've always figured life to be on a timer. i don't know how much time i got, i don't "make the most of it" every day/second.. i guess i'm trying but certainly not trying my "best". What i do know for sure is that i do want to face that fact.. face it like i am not afraid of it. i therefore made decisions / choices.. and it never bothered me anymore.. not one bit. If i had to wager, i'll probably die by talking to someone (trigger them with my big mouth) and end up a hit and run victim or just have a giant piano fall down on my head from the third floor like in a tex avery cartoon <3 i don't mind, i know it is coming (come to think of it .. i'll probably be in a straitjacket by then )i don't do stuff lightly either ..on the contrary! And funnily enough it is starting to sound like a medical regiment/treatment (all those things to do every day relentlessly) .. you see? i am building from scratch my studio/pocket theater 20 meters away from my house, right now i'm cutting trees and digging roots out (sometimes carrying trees that should survive from one hole to the next) .. this to allow me to dig/make the foundations (also so i can "hide" a bit of the overall height) .. so i do the woo peng magic process.. i do the matrix thing! i put on music that will focus me .. i suit up .. i use ALWAYS the proper tool .. i always use the best position to cut/hit/saw/etc .. never do ii let anything up to chance i never do anything that will injure me, never a back move that i won't walk away from, i turn myself into a robot while i suit up.. because any injury (wrist/ankle/spinal cord/etc) would put my project in the bin) Right now it is working f ck !!! even that is a habit.. turning into supersayan .. robot ..is that not purposefully disallowing oneself to go further than one's grasp!? f ck .. and then i remember that everything tells me / everyone tells me i'm crazy to undertake this task, and then i feel like peter pan .. .. while i am maybe not trying to exceed my own grasp.. at least i am setting myself up to exceed everyone else's... | ||
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AbouSV
Germany1278 Posts
On February 22 2017 03:16 opisska wrote: In case anyone is remotely interested in updates, I just came from the specialist and yep, I have MS for sure, it seems to be a pretty clear cut case after inspecting the MRI, the spinal liquor and the symptoms. I am starting glatiramer acetate in two weeks (needs to be approved by the insurance company, but I was told my case is straightforward). It's gonna be a pain in the ass, because it's injections and it needs to be kept cold (so trekking's gonna be challenging) but from the available choices it seems to be best, as Interferon is contra-indicated for me due to my other medical conditions and the new pills I can't remember how they are called require constant supervision due to side effects, which would mean even larger changes in my lifestyle than the injections. Also, GA seems to be the least damaging to my body overall - I am probably gonna have some ugly patches around injection sites, but at least it's probably not gonna kill my liver any time soon. I am almost surprised how calmly I am taking it now. I cried a lot when I was first confronted with the reality, but now it really seems like another chore to deal with more than anything. If there is an emotion to speak about, it's mainly anger with the way how world is and how we all just live a big lottery with our bodies where we are only waiting to be told in which way do we lose. Is that a permanent treatment, like you'll have to do this every week/month for the rest of your life, a one time treatment period, or a few times here and there? | ||
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opisska
Poland8852 Posts
On February 22 2017 19:42 AbouSV wrote: Is that a permanent treatment, like you'll have to do this every week/month for the rest of your life, a one time treatment period, or a few times here and there? Three times a weak, prefferably for the rest of my life as the only reason to end it is that the disease progresses into the second stage, when the treatment becomes useless and more radical and potentially harmful things have to be used to try to stop progression of disability. Or until an ultimate cure is found. | ||
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AbouSV
Germany1278 Posts
Don't lose heart, stay strong! | ||
BigFan
TLADT24920 Posts
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opisska
Poland8852 Posts
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