Last reply 3 years ago
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I was just diagnosed with MS & can’t quiet wrap my head around it!! Is my life about to drastically change?

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krisp
3 years ago

Hi Sam
What is the story so far? Symptom wise mri etc
For most people it takes awhile before Ms significantly effects them


stumbler
3 years ago

@sam2013 , it depends on your definition of drastically! 😉

But, MS is now a manageable condition and it won’t kill you. So, it’s all about managing this condition.

There’s some good information here:-
http://www.mstrust.org.uk/shop/products.jsp?catid=56

You can read it online or order hard copies.

So, for the time being, be kind to yourself and let this diagnosis sink in. Use this time to learn about the MS, to understand it and how you can live with it.

I normally suggest that you introduce balance into your life. By this, I mean a balanced and healthy diet, together with a balanced lifestyle, avoiding extremes.

The other bit of information I can offer is to avoid worry and stress. I know, WTF! – I’ve just been diagnosed. But seriously, worrying and stressing will not provide any benefit. In fact, getting stressed will release chemicals in the brain, which can antagonise your MS.

So, hang around, fire any questions that you have and we’ll do our best to answer them.


tabbycat
3 years ago

No! You have probably had it longer than you think, and you may even have founds way to deal with it before it had a name. The doctors will find the right medication for you and hopefully things will all calm down and become the new normal. It is scarey, but it isn’t the end of the world and there is still a life to be lead. Be strong, be you !


simone2
3 years ago

Hi, I brought a book by Judy Graham MS NATURALLY which really helped especially when I was first diagnosed.


hollylb10
3 years ago

I had that book too, it breaks you in gently to MS and has some good advice. 🙂


Anonymous
3 years ago

Bad luck Kid, just like us all.

Look Sam, you sound young and like you don’t have much information or any just yet. Thats ok, your new and I am absolutely not here to scare you. Which is hard because some people do find me a bit scary, I’m not at all I promise.

Yes your life is about to change and nothing about MS is good (well I found 1 and only 1 positive but thats too complicated for right now); but the good news is that you are in control and you and only you can direct that change as you choose. My No 1 piece of advice is learn, read, read, read, read as much as you can about everything to do with MS and ask your doctors questions, as many as you need. Don’t ever be pushed or bullied into making decisions by anyone, including your doctors, until you are satisfied and comfortable with you choice. Don’t ever make a choice just because you had to or there was no choice or everyone has to go through that or take that or do this.

This is YOUR LIFE dude. As far as your concerned, the most important thing in existence. Would you trust the most important thing in existence to a stranger in any circumstances? Exactly. So educate yourself, minimise your reliance on anyone in terms of information required for smart decision making, especially doctors (I hate to say it but its the truth); and by doing that you will ensure that whatever changes you encounter due to MS, they will be your changes, in your control, for your life to be the best it can be.

Try this on for size, it’ll probably take you a long time to fully appreciate what I’m saying here, but in a strange funny sense, you just became fully liberated.

Stay strong


graham100
3 years ago

Hi stumbler. My friend is running the marathon for Ms. As her sister had it. Died age 47. Was told cause of death MS???


Anonymous
3 years ago

Graham, we meet again, obviously this is not stumbler but I’m happy to stick my beak in anyway.

I trust any nonsense between us from last year is long forgotten, until I just brought it back up 🙂 Na, seriously, “the past has been and go and therefore in reality, does not exist”

Back to what you just said, it is my personal belief that MS does kill you eventually, no matter what the adopted standard line is they feed us to keep people positive and not thinking they are dying, when perhaps they are? I mean we have all been dying since birth in actuality. Does anyone seriously think a chronic disease is going to make that different, stop it, slow it down, anything else counterintuitive you can think of? Of course not, its a disease and it affects you immune system, brain, and so there’s no where it doesn’t reach. And what do diseases do generally? Kill s***.

I took it as a death sentence, even if it is a protracted one. I didn’t take that mental approach negatively though. I used it as a tool to really live. 100 boring, shi*house, mundane years working yourself to death for absolutely nothing or 47 years (for arguments sake) living like you knew you were going to die and so you decided to make the most of it. What would you choose? I made mine in an instant.

Everybody is different and will have radically different view on this I know. this is my version of thinking positive


Anonymous
3 years ago

@billybonza, My sentiments exactly. I would have said it slightly different but would have meant essentially the same. It has been amazing to me how few MSers seem to believe and are fairly oblivious about the most important thing in their life! I read, read, read, write, write, write to keep knowledgeable and exercise the noodle. I never have anything new or changed without me understanding it fully and most times I initiate it. The avatar softens my edges!


Anonymous
3 years ago

Hey, thanks mbrsinc. I think many many of us think the same but for some reasons never articulate it for fear of being different. And don’t worry, no one else would say anything to be said like me, its all part of all of our individual charm.

What Avatar? 🙂 Oh the interface thing, I forget about it. You would get exactly the same from me from where you are or if you were sitting right next to me. I once made a decision to make a conscious effort to never sensor myself or my feelings. That conscious effort melted away 20 years ago and now i am just me, always.


graham100
3 years ago

Hi billybonza. Iv forgot what we even had a problem about. As I said my friend told me that and said, sorry if that’s not what you wanted to know? I said no problem my brother died age 35. Cancer. And was a super fit sportsman No4 in UK. So i feel I’m wining by over 20yrs already. What will be will be. I’m lying in the sun in marbella at mo. So can’t be all bad. Probably won’t be able to move in a while though. lol


Anonymous
3 years ago

Me either mate. I can relate in some way to that story too. My uncle, marathon runner, fit as a fiddle always took care of himself never smoked or drank really other than minimal social drinks like xmas time and he and my aunt deliberately made the plan and set out to retire by 50 – 55 latest. He got there no problems and then got bowel cancer about 6 months after retiring. He battled it for 8 years but was just a mess and miserable the whole time. After he died my aunt fell to pieces and she has never recovered from her grief. All that for being good decent people just trying to be smart and help themselves.

All I have to say and learn from that is f*** that! Im getting jiggy with it in every way I can while I can. Try and stop me anyone


Anonymous
3 years ago

MS absolutely kills! They like to say they died with MS when in reality they died because of MS. MS directly causes a myriad of symptoms that ultimately limits mobility which results in “comorbid” conditions that can reduce life expectancy. One of the Lemtrada research investigator’s here in the states mother died of MS. That’s why he studied neurology. Another well regarded Lemtrada research investigator wrote the following in an article about the 20 year anniversary of Betaseron:

Twenty year follow up of the patients in this trial (98% ascertainment) showed an astonishing and still marvelous effect. Those people who waited 2-3 years to start treatment with Betaseron (the first interferon-beta for MS) are not only more disabled, but twice as likely TO DIE from MS. The government will not let this information be discussed by the pharma companies because they did not approve the study (more on FDA censorship below and at another time). So both patients and doctors are unaware of this important finding. An old dogma is that MS does not shorten lives (which is wrong). MS is more deadly than breast cancer. MS patients are three times as likely to die as their peers. Why? Disability kills. More respiratory infections.

So we can be thankful that interferon-beta makes MS better by 50%. In fact at first symptom the initiation treatment protects the majority of patients from a relapse of disease for over 7 years.

There are lots of examples. Ask @us-emma who mentioned that MS shortened lives in a recent post and in her very fine blog. It is not new. It is why I joined this blog to spread the word that young patients (newly DX’d) had the best chance ever to effectively cure MS with lemtrada before any permanent damage can occur.


Anonymous
3 years ago

Ahh, joy. Do you see what we’ve just witnessed above people? Intelligence at work. Poetry in motion. Thank you sweet author

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