Diagnosed with Ms

[errolsweet53]

I was diagnosed 06/03/19...so I'm new but still dont understand WHY

[jimeka]

Hi, I don’t think any of us do but we just have to make the most of every day while we can, Blessings Jimeka 🦋

[falalalala in reply to jimeka]

That sums it up well.

[Sukie427]

Welcome to the club that nobody wants to join. I don't think that medical science knows that answer yet. Cor example, my mother had it, but they say children of MS patients may have a genetic predisposition, but that it isn't genetic. ?????? Go cry, beat up your pillow, go in the backyard and scream your lungst out. All very normal reactions. But in the end, it all ends up the same. We have to first learn what our new normal is (and it fluctuates a lot, expecially at the beginning), resign yourself to the fact that you have only 2 options: fight it and keep going, or don't. You can guess the consequences of each option. On this site, you will find a lot of support and information from our varied experiences. We are from all walks of life, of all colors, faiths and male/female. But your neurologist is your best (and in the end only) source of medical advice, so make sure you get one who specializes in the treatment of MS. Good luck

[Raingrrl]

Welcome errolsweet53 ! There is a broad spectrum of people dealing with MS here. We are a wide range of ages and experiences. MS affects everyone a little differently so it’s a good place to get and share information.

I was diagnosed with RRMS 20 years ago and so much more is known today about the disease but research continues to figure out the ‘Why’ of it all.

[RoyceNewton]

G'day Errol. There is an easy answer as to why it will just take you time to come to terms and understand it. You have Relapsing Remitting ms because you are human. It is a human condition so therefor you can have it, pretty simple but like I said, it may take you awhile to understand it. Either way welcome to yje family. We are pretty sociable people and will answer questions when asked. I look forward to talking to you one day, we have time this illness takes a lifetime to run its course. Good luck and I am here if you need any advice.

[errolsweet53 in reply to RoyceNewton]

Cool..that's good to know..

[greaterexp]

There is so much to work through physically and emotionally throughout the disease course, but probably a bit more early on. You’re welcomed here by a few thousand people who are in the same boat, all of whom are eager to share and encourage.

mymsaa.org/

[Weldon60]

Welcome to select group of people. None of us wanted to be a part of the group, but here we are. The why can be different for different people. I am a minister and I have learned much from my experience that has made be a better minister. My desire is that the MS may not be terrible for you. It has caused me to make changes in my life and to alter some of my goals, but I am satisfied with the life that I have built.

[Peruzzot]

Welcome to the group.

MS doesn't seem to care how well we take care of ourselves, or how old or young we are. It just likes to attack us. You've just to learn to roll with the punches.

[DIsneyQueen]

Hi errolsweet53, as everyone who has commented has already said, welcome to this site and club no one chooses to be a part of, but here we are. None of us know the answer to your question, but look past that and believe that it is because you were chosen for a purpose. this disease will change you but not get the best of you. It looks like from your photo that you have a lot of life left for you to live. It might not be where you wanted or expected to be at this stage in your life, but here you are. You will find lots of “venting” space on this site as well as support. Work with your neurologist to plan the best course of action for you and stay active. Don’t give up what you love doing, you might just have to adapt to how you do it. Also, give your family and support people some slack, they are probably new to this too and have to learn to deal with your MS just like you do. ( I have found they sometimes have a more difficult time adjusting than I did) God Bless You, Best of Luck and Welcome.

[errolsweet53 in reply to DIsneyQueen]

I exercise every day,,its not going to take total control of me...my fiance is always getting me to do more...she works with people who have disabilities..she helps me to take this head on

[sashaming1]

No one knows for sure and there are many theories out there. My leading choice is having a previous health issue which triggered a change to ones immune system and causes it to attack healthy portions of the brain.

[errolsweet53 in reply to sashaming1]

I've had a snowmobile accident 20 years ago,,I think I had a form of whiplash and never had it looked at..I also have 2 herniated disc

[sashaming1 in reply to errolsweet53]

I don't think that whiplash or herniated discs would have triggered a change to your immune system(?)

[carolek572 CommunityAmbassador]

Welcome to this forum, errolsweet53 I don't think anyone has the answer to why 'ms' and why me ~ yet. I have that question myself, and no answer. I am taking a DMT that helps to control/slow my 'ms' progression, and that is the best that I can do right now. Again, welcome, and I look forward your participation in this forum.

[errolsweet53 in reply to carolek572]

Thanks...

[DM0329]

Welcome to our group (that no one really wants to join), but here we are! I am somewhat of a "newbie" to this group; but not multiple sclerosis (just celebrated my 25th-year anniversary of my dx and will be celebrating my 22nd-year on Avonex tx this upcoming September. . .sheesh time really flies, huh?).

Allow yourself time to get used to the dx (FWIW I'm still getting used to it, too, LOL). But, way back when I was dx in May 1994, there were no readily available tx's (Betaseron just hit the US market and was dispensed via a lottery!). Currently, there are many more tx's available. That's a positive step in the right direction!

Again, welcome,

Donna

[MarkUpnorth]

Welcome!!! You've just won an endless lifetime supply of PIA gifts that will challenge you everyday! Okay, that's supposed to be a joke? From someone who's been there, done that, and probably will for life, BUT, you can search out my posts if you so dare? Definitely better than putting a gun to your head!??

I've gone down to the bottom fighting M.S. doing everything money could buy to fight it. As CEO of my companies, we all had the best health insurance money could buy, because I had M.S.! The best doctors in the country, the best meds...still slid all the way down into a comatose like state for years after fighting relapse after relapse. BUT, and that's a big BUT. I pulled myself back out of that pit, as have others. Not many I'm told, but then there aren't many willing to do like I did. YES, see your neuro's, do the drugs, but I'm back from all that. I do no drugs. The experts tell me I can't anymore. I developed and lived with flue like symptoms from the various meds for years.

Now: I'm getting better! I've had M.S. for decades. But I'm a fighter. I used a cane to force myself to get steps on my tracker, regardless of how hard, how many falls. I focus heavily on nutrition, nutrition, nutrition. And avoid processed foods like the plague. Unless I can not only pronounce their names, but also understand what's in them. Citric acid as a preservative, okay. I do fresh lemon or lime juice to keep stuff from turning before I can plate it. But honestly, there's little out there that comes in a package that I feel okay with. Yes, it's a PIA to have to cook, from scratch. But it sure beats the alternative. Like where I came from not doing so.

I lied. I admit it. I do use a drug, cannabis flower, high CBD strains, to kill the evening neurologic pain that kept me awake nights for years and years, and for which I tried every script my neurologists, plural, could think of. Nothing worked. When Med C became legal in our state, you bet I was there day 1. Per the instruction of my neurologist who headed one of the fancy Chicago hospital's M.S. programs, vape it, don't smoke it. Yes, I know all the negatives about vaping, but they are not talking Medical Cannabis Flower, without added chemicals. Anyway, two puffs day 1, and I was euphoric! There was little to no THC in that strain so I shouldn't have been. But the pain was like magic gone! I had tried everything!

Yes, I have so many accumulated "gifts" from M.S., some you probably couldn't imagine. I always ask when I see my neurologist, can I just cross off those I don't have from the long list? BUT, I'm shaking them slowly.

Even things the expert doctors cannot explain. That should have been permanent? I've never heard of anyone undoing that!

My recommendation: Nutrition, nutrition, nutrition. You heard of Dr. Terry Wahl's. She has books, good start. I heard of her from my M.S. program Neurologist. I didn't have to be that strict I found out with time. I still enjoy dairy... Yeah, so you're lactose intolerant like my wife...well nix that one to start.

Anyway. You didn't do anything wrong to get M.S., though you really shouldn't have done that trip to xxx!. It's all because of things like sodium acid pyrophosphate, monocalcium phosphate, soy lecithin, and yellow #5! Now I'm pulling your leg so I can LOL! I got that off a box of Pop Tarts I got for free from the produce market. Why???? Because I can't turn down free? Can I find someone starving to give it to? Yeah, that wouldn't be nice.... Can I feed it to the birds in the backyard? No they wouldn't eat that....maybe the crows that come every so often? I know!... the raccoons that set off my backyard ring nites, at times like 3AM, they'd eat it! Maybe they'll get upset stomachs and stop coming around?

Anyway, get the point? Processed foods are engineered to be made. Not to be eaten. People in the few remaining parts of the world that don't have processed foods, or toothbrushes, don't have auto-immune diseases including M.S., or cavities!

Note for yourself: If you do let M.S. get the better of you like it did me, even though I went all out via modern medicine, you may become a nutcase like me? I ran a fortune 500 plant in a foreign country, owned my own corporations including receiving awards on doing so......now, I'm still recovering, cook, for myself and my wife! And answer to people of this forum, trying to help them too?

Note to myself: Shut up already! You lost him after meds for years.

[errolsweet53 in reply to MarkUpnorth]

I am just trying and facing this disability...but I will slow it down,,I guarantee it...I'm strong

[bxrmom]

Welcome to this great group with great people. Happy to have you, sorry for the reason. Nobody knows the why, but when first dxed, that is the big question everyone asks themselves. It's a big learning curve to find out what it is, the meds that are out there, and what you can do to stay healthy. Ask the questions, look around the group, and jump in anywhere! Looking forward to getting to know you.

Jessie

[mrsmike9]

Nobody knows why. Why us? Just lucky I guess...

[hairbrain4]

Welcome to the group, there are a lot of great people here that understand what you are going through right now. I was diagnosed in 2005. It's hard at first because you don't have any answers. Be patient and persevere, some of the answers will reveal themselves to you as you research & learn more on the disease. The most important thing I think is acceptance, accept that you have MS and that it isn't going away. There are a lot of DMTs (Disease Modifying Treatments) that will help with the symptoms but won't cure it, as of yet there is no cure. Try to keep a positive attitude, although hard at times. Stress can bring on a flare or relapse at the drop of hat. Be strong, as you are in charge, not MS. You have MS it doesn't have you. And knowledge is power. The more you learn about MS and your own body you will know how to handle different situations as they come up. MS is different for everyone. The most common symptom that we have is fatigue. Other than that everything varies because of where the nerves in your brain & spinal cord are under attack. Be strong, hang in there and check in here often.

[errolsweet53 in reply to hairbrain4]

Thanks....I have worked hard and strong for years, it's hard to realize I have to take it easy now..

[hairbrain4 in reply to errolsweet53]

That part is very hard, but if you had a heart attack you would probably slow down because you don't want to have another one. MS is pretty much the same, if you don't want MS to have relapses then you just have to take it easy and don't stress yourself out about it. I look at life as each day is a new adventure because you really don't know what will happen next!

[errolsweet53 in reply to hairbrain4]

Good advice...thanks

[Jesmcd2 CommunityAmbassador]

Hi and welcome errolsweet53 how long since your dx? (Diagnosis) 🤗💕

[errolsweet53 in reply to Jesmcd2]

Since 6/1/19

[Jesmcd2 CommunityAmbassador in reply to errolsweet53]

So this is still a shocker to you. I'm sorry. It's been 4 yrs for me, and it's not the end of the road. ☺️ Do you have a good MS neuro errolsweet53 ? 🤗💕

J🌠

[errolsweet53 in reply to Jesmcd2]

Since June of 2019...

[Jesmcd2 CommunityAmbassador in reply to errolsweet53]

Have a good MS neurologist yet errolsweet53 ?

Hang in there! MS is NOT the end of the world. It's just a change in the one you have!🤗💕

J🌠