Explaining MS

[Jesmcd2]

I know we've talked about it before. But it's a good topic.

How do you explain your MS to others?🌠

[Shona68]

Hi this is my second post first ones disappeared lol ,I feel very uneasy daily,maybe it's because I've not been diagnosed yet not sure why xx

[erash in reply to Shona68]

Shona68 hang in there...

[Jesmcd2 CommunityAmbassador in reply to Shona68]

Hi Shona68 and welcome. I'm sorry your having difficulty with your posts. Had you tried signing out, turning off your PC, phone,tablet, for a min then signing back in? Sometimes that's all it takes☺ l hope that works for you.

Being dxed for MS can be very difficult. From what l understand, it can Mimic all kinds of of other things. Please believe me, this is the last thing you want to have. Do you have a Neurologists yet?

Jes🌠

[erash]

Jesmcd2

I'm following this thread because I never know exactly what to say...

People may have preconceived ideas, esp. If they relate MS to a celebrity. Annette funicello, montel, Osborne, Jamie...

[Jesmcd2 CommunityAmbassador in reply to erash]

I hear you about being compared to the rich and famous erash . When all this started for me, my guy serched online and came up with those names also.😑 And thought l could do what they coul do. Problem is, they have the means to get the very best possible care. And my guy got a wake up call!😅

Jes🌠

[WAshingtongirl]

Jesmcd2 , I've always used the electrical cord analogy. That best explained it to me. Simplistic, but easily understood.

[StacyHayward in reply to WAshingtongirl]

Me too. Simple is good.

[Raingrrl in reply to WAshingtongirl]

@tutu... I use the electrical cord analogy too. The funny thing is that even though it's a simple analogy, people don't always get it.

[Jesmcd2 CommunityAmbassador in reply to Raingrrl]

Raingrrl have you tried using the "wire" one? That can be made to be even simpler. One wire coated, take part of the coating off, and you get a short circuit.☺?🌠

[Raingrrl in reply to Jesmcd2]

Yes Jesmcd2 ...that is how I explain it. I tell people to picture the cord on a lamp. The wires inside conduct the electricity and are insulated by the outside coating. Then I tell them to think of what happens when the outside coating gets a hole in it...that the electricity is then not as efficiently conducted from the source to the lamp. Once they get that picture, I try to then explain it in terms of M.S.

[WAshingtongirl in reply to Raingrrl]

I think Jesmcd2 explained it better than I did, but I've had a few people not 'get it' either Raingrrl . By the way, are you from WA state?

[Raingrrl in reply to WAshingtongirl]

Hi WAshingtongirl ! Yes...I'm in Western Washington State. I've lived here since the early 80's.

[Midgey_Midge06 in reply to WAshingtongirl]

I use that one as well. It is the easiest.

[agate]

I don't. If I have to mention more about it beyond giving the name, I mumble something about a disorder of the spine. I hesitate to mention the brain or the central nervous system. People too easily leapfrog from that to deciding I must be crazy, and I'd prefer that they didn't decide that. Even if it's true.

[Jesmcd2 CommunityAmbassador in reply to agate]

agate Everyone that knows me, knows lm already crazy!😅😁 So that wouldn't help me. 😅

Jes🌠

[heidilegs]

I don't why should i

[Jesmcd2 CommunityAmbassador in reply to heidilegs]

Hi heidilegs How are you? We haven't seen you for while. How come you don't tell anyone if you don't mind me asking?

Jes🌠

[heidilegs in reply to heidilegs]

I am not a good speller and i have a hard time with thank you for asking

[Karen-x]

Its a good question Jes. Because as much as I would like people to get it (esp my family), they don't. They all know someone who has MS and its not a big deal.

[Jesmcd2 CommunityAmbassador in reply to Karen-x]

But it is a big deal Karen-x . To you at least, not to mention how it changes your life! If l remember correctly, you were dx'ed about this time also?

It's sometimes hard for my boyfriend to understand how one min or day or days l can be great, then crash! Something new or old rears its ugly head. Then l have to remind him, m just along for the ride now.☺

Jes🌠

[Shona68]

Hi jesmcd2 ' yes no one in their right mind would like to have ms " ye I am waiting on neuro app it can take 12 wks here in Scotland ,a lot of the probs I have I've had for years i.e. Hip pain neck pain bowel troubles ,TN ,but this last 2 years I've developed pain in both arms ankle eye trouble and numbness in hand and feet ,I've had every blood test in the book and all came back fine apart from one showing high inflammation originally doctor thought I had fibro,but that's been out ruled , just trying to keep busy with work and family nothing more I can do xx

[Jesmcd2 CommunityAmbassador in reply to Shona68]

It can take along time to get the right DX Shona68 . Just because it's really not something the look for. Do you have a family history of MS? Or something that would make you think you have it? Not that it's hereditary at all!!!

Staying positive is the only way to be☺

Jes🌠

~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

[greaterexp]

If pressed, I usually say something about short circuits, but I like Tutu's explanation better. I don't think I could ever explain the crazy symptoms with their ups and downs.

[Jesmcd2 CommunityAmbassador in reply to greaterexp]

I think the the hardest is the just not knowing to expect greaterexp Kinda like a cr*p shoot. How do you explain something that we don't understand?

Jes🌠

[greaterexp in reply to Jesmcd2]

Jesmcd2 , you hit the nail on the head. I still haven't really explained it well to my husband. Poor man! With every new symptom or hearing about the possibilities of future problems, it really floors him. Alternate universe!

[Jesmcd2 CommunityAmbassador in reply to greaterexp]

greaterexp 😅😅 sometimes l just l just look at my boyfriend and say welcome to my planet, now get off!😅😅 I don't look for future problems though. To me that's almost like asking for it.😕 And l Refuse to do that!

I am a relist though, and Weill take measures to protect myself, if needed.☺ IE cane for a very long day,use hand rails always! Shower chair, and no step stool, ladder without someone with me.😑

Stay positive and Strong Women!🌠

Jes🌠

[RoyceNewton]

Imagine the body is like a crazy wired electrical system, like those telephone wires u c on tv in foreign countries, That is our central nervous system. Now imagine it is covered in rubber like a power cord. You know that power cords have lots of insulation layers. Well something in my body, and nobody knows what it is or how to stop it, keeps eating that insulation. That then makes the electricity not run as cleanly through different parts of my body & my brain, causing a crazy mixed up bunch of symptoms. That is why (put in your own issues) happens to me. Sometimes the body can repair quickly if its a new problem and sometimes it won't if it has been damaged a lot, and that is what is happening to me. If u prefer water pipes to electrify or I guess cover belts, anything that u r comfortable with explaining to somebody. Just keep it as simple as u can if they r fascinated u go deeper if u r comfortable with that, u can say myelin instead of insulation or whatever u feel comfortable with. Put it in your own words u will get it after a while. Personally I just smile and say I am retired and I let them ask, but letting them ask is really easy.

Royce

[Jesmcd2 CommunityAmbassador in reply to RoyceNewton]

I think you have them all covered RoyceNewton ! I like the wire one myself ☺🌠

[RoyceNewton in reply to Jesmcd2]

Glad I could help.

Royce

[heidilegs]

Hi I have had it for 20 years l have been two a lot of meeting and Thank God I am doing good

[Eleyne92]

I've spoken about my MS using the analogies of having holes in my head and damage to the coating on electric wiring. A short-circuit. I used some slides of MRIs and nerve diagrams to help, but most people have gotten it with the description.

Symptoms ... cog-fog and fatigue are like thinking or moving through sand or biking up a mountain with switch-backs and detours. Spasticity ... my feet are nailed to the floor.

[WAshingtongirl in reply to Eleyne92]

I think I'd get some jokes/remarks if I admitted I had holes in my brain. 😉

[Pbailz]

Similar to most of you I talk about cords but I tell others that people without MS are like the old school phones with cords when the message always got through and I am like eatly cell phones when calls are constantly dropping, missing calls, and sometimes words are fuzzy. That's why sometimes my body looks like it is working fine and then other times I'm struggling with energy and words & need my cane, etc.

[Fancy1959]

Jesmcd2, it's Fancy1959. I explain that my body has been invaded by a virus that has turned my own immune system against my body. It has chosen to attack my central nervous in both my brain and along my central nervous system. I explain my spinal cord is wrapped in and protected by mylin much akin to the insulation that extension cords are wrapped in. This virus attacks and eats thru the mylin or insulation along the spinal cord and in the brain interupting and distorting the messages sent from the brain to your fingertips to your toes and everywhere in between. This can cause a multitude of issues from walking, to fine motor skills and dexterity, to memory and everything in between. The overall affect can be devasting to the body's functionalbility.

[Jesmcd2 CommunityAmbassador]

Fancy1959 Do you find the "get it"?

Jes🌠

[Fancy1959]

Once I compare the damage done to the mylin to an electrical cord lacking it's insulation I do generally see the light bulb power on and the light shine out their ears!

[Taylorsmom]

Hi Jesmcd2 . I let people know about the tingling and numbness in my fingers. Also the electrical charge that shoots down my arms to my fingertips whenever I look down. No one ever seems to understand how I'm feeling but a lot of people know someone who has MS. What they are going through is always different from what I'm going through. Lol, people tend to bring up Montel Williams to me and the fact that he's doing so well and he has MS as if all MS is the same.

[Shona68]

Hi@jesmcd2 no no one in my family have ms my dads diabetic,the reason I think I have is I had an X-ray on my neck few months back doc thought might have trapped nerve in neck cause every morn its numb when I wake no trapped nerve was found but was told their was lots of inflammation " my doc the said this is all nerv related I also have a burning feeling that runs down my back when I look down ,hopefully once I'm seen and get a mri this can out rule anything bad thanks for getting back xx

[KrittyKat60]

@Jesmcd2 Great question. I gave up explaining my MS. If someone is interested I suggest they google MS or go to the MS Society website. They will get a lot of good information from that rather than me trying to explain how it affects someone like me. If they genuinely care, they will make the effort to educate themselves. If not, then I know I didn't waste my energy and time explaining a complicated illness that affects everyone very differently. Until you have walked in ones shoes and experienced this illness they can say they understand but we all know they mean well, the reality though is there is no way they can possibly understand what it's like just to get out of bed everyday. Wish it could be different but I don't ever see opinions changing. Mostly family, they just see us as complaining or exaggerating because not all of us look sick visibly. And it's hard to say "Sorry I just don't have the energy today to go to lunch with you". That's just a general example of a daily activity I find myself having to say more often than not. 🤷🏻‍♀️