How do you explain symptoms to people?

[isaacthegamer]

I was diagnosed with MS 8 years ago. In that time, I have had easy to understand symptoms, like optic neuritis, and hard to explain symptoms, like losing my balance.

My current girlfriend is a yoga instructor and is in complete control of her body. When I stumble or fall over, she thinks it's because I am not conscious about my stomach muscles. When I tell her I am perfectly stable and then just lose my balance sometimes, she doesn't get it.

I used to try and explain it to other people without MS and they never understood it either. My mom is the only one that understands, because she has MS too.

How do I explain my MS symptoms to my girlfriend and have her understand? Thanks.

[TLC1104]

Hi again Corrie.
A bit of message was deleted. Oops,  hahaha
consultant referred me to specialist,  I'm on a priority list.......wait for it!!!!! 12 - 16 weeks.
I could holiday for that time if I  didn't walk like an old lady! Hahaha.
T

[TLC1104]

Hi Corrie,
thank you for replying,  
The consultant who phoned was the one dealing with me in hospital,  he was great,  we waited a couple of weeks as well for the results, that was why they sent me home to wait on them.
The consultant got in touch with my doctor to let her know what medication to start me on.
I've been given Gabapentin to start taking.
I was wondering if anybody has been taking this too, I would appreciate any information regarding it as I'm still  working my way through starting it.  
Thanks again,  hope I can chat to you again.
T.

[Corriel]

Hi TLC, welcome to the group. Others may not have seen your post since it is attached to this thread so feel free to start another thread so everyone can see it and say hi.

An odd way to find out that you may be dealing with MS so hopefully your appointment with the specialist won't be too far away.

I am sure you have tons of questions so feel free anytime,

Corrie

[TLC1104]

Hi to all.
I have just joined this site and the first thing you notice straight away is how wonderful and lovely everybody is.
I've had ( only 2 weeks ago ) my consultant phoning me after checking LP results saying it looks like I am dealing with MS & he's referring me to specialist to confirm and start treatment,  I'm starting to get to grips with what is happened to me.
Everybody is so helpful to all who needs help or advice.
I hope if it's okay I can get help and advice to try and get me to my 'normal' self again.
Thankyou
T.x

[HVAC]

It took years before my husband understood what MS does to my body. He wanted to ignore it and hope it would go away. He was even embarrassed at first. She sounds like a good person.

Alex

[kwarendorf]

Having an understanding partner is a really big bonus :-)

Kyle

[ConfirmedRachel]

That's good news Isaac,

First hurdle successfully cleared and path open for further exploration - sounds good to me.

Nx

[isaacthegamer]

Thanks everyone for your responses. At dinner, I explained MS to my girlfriend as if she had MS and had my symptoms. Since she is so in control of her body, I explained my balance related relapse, as if it happened to her. I think she understands now. She also said she wanted to learn more about MS too, since it's hard to fully understand everything.

[ConfirmedRachel]

Love all the different ways you have all explained MS in laymans terms. I've only been dx since Feb and had ON which was easy enough to explain, the cognitive stuff etc is less simple.

I normally say "look at your arm/hand, pretty normal, now imagine it's had a cut and mended - you see a scar yes? It'll be similar to before but never quite the same again.
This is what is happening in my brain, bits are cut and producing scars so although you can't see it, things are different in there. MS affects the CNS ie the parts that let different bits of my body communicate 'automatically' normally, they have the scars - so my body is the similar but not the same"

To youngsters it's a bit easier - "your CNS is a bit like a mobile phone, it communicates with all the cells in your body. MS is breaking my body's mobile, so it's trying to find other ways to communicate! Sometimes the new way doesn't work as well!"

That was a bit of a witter sorry!

For your yoga girlie, i do Pilates and the core strength is the big key too, if that is what she can connect with, try comparing to someone with a broken back severing the spinal chord ie no signals getting to legs and therefore no longer being able to walk. Core muscles would make no difference. The MS damage means your body doesn't have the same signals to balance. It's the same sort of damage as its all CNS.

Good luck, I'm sure you'll find a way to tackle things in your own words.

Nx

[HVAC]

You can have the perfect muscular body. You have a nerve that is damaged and not sending the right signal. I knew two Olympic athletes who had MS. One ended up wheelchair bound and the other had trouble walking. It does not matter what condition you are in with MS. There is no controlling MS.

Picture the nerve as an orange extension cord. First you get a cut in the orange jacketing. Then a cut exposing a wire then both wires. Then the two exposed wires touch and short out the extension cord. That is what happens with MS.

It is a neurological disease. It is also an invisible disease meaning people do not always see it. The NMSS has a booklet "But you look so good"

Alex

[immisceo]

I just tell people, "My muscles are fine. The problem's with HQ."

People without CNS damage live in a blissful world where actions and perceptions are completely connected. Problems seeing? There's an issue with the eyeball. Problems walking? There's an issue with the legs. Problem grasping? There's an issue with the hands.

It's very abstract for people to understand and accept that all three of those hypothetical questions for those with MS can be answered with there's an issue with the CNS, there's an issue with the CNS, there's an issue with the CNS.

Does your girlfriend know what MS is? Does she understand how it effects proprioception? It sounds like she's a little behind the curve on these concepts.

My husband is a software engineer and thinks of it in terms of frayed wiring or an overheated CPU or too many background processes running. I'm not sure what kind of analogy works with yoga though...

[kwarendorf]

Hi Isaac -
Barb and Corries make ggood points, and to me they are variations on a theme. Our central nervous system, our wiring, is damaged. No matter how able the rest of our body is, the damage prevents the proper distribution of information. WIthout proper information our bodies cannot respond "normally".

No matter how aware you may be of your stomach muscles, if they are not getting the right messages you are going to have balance/stability issues. Your GF needs to understand that this is not in any way voluntary.

Kyle

[Corriel]

Hi there, it is a common struggle for us to explain how this all works (or doesn't work as the case often is).

Oddly, my brother whom I thought didn't understand said to me once that my problem wasn't mechanical but electrical. The engine works fine but the wiring keeps it from doing what it is built for.

Not sure if that analogy helps but I have had limited success using it with others.

Just keep trying to explain it and I know she will understand eventually.

Corrie

[bbassel]

I am constantly dealing with this issue myself and wish I had the answer for you.

Things happened very quickly for me since my diagnosis in march 2013 and it is very difficult for people to understand. One friend in particular used to compare me to other people with Ms and it drove me bonkers.

He meant well but he used to complain about me not doing fun thing with him anymore and thought I was just choosing not to. I wish I could go to a bar and dance or go to the city for the parade in the middle of summer, but that is just not possible in my world right now.

Now that my disease is physically very visible a year later, I don't ever hear a peep from him lol. It did help him reading my Mri reports of my brain and spine.

I think people might think we are exaggerating things or that we just don't want to be social anymore. Since a majority of the things we go through are not visible to the average person. I can't really blame people for that and have tried to remember that when interacting with anyone.

It is very frustrating because sometimes you just wish that everyone would understand what you are and have gone through.

All you can do is be open and honest with your girlfriend and more than likely she'll come around :)

All the best,

Barb