Royjr

Tell your friend that every MS patient’s symptoms show different and that what one show is unique. Even though symptoms may be similar they present different. Early in my diagnosis there was days I didn’t show any symptoms of MS. Now it’s another story.

Jesmcd2CommunityAmbassador

Hi Juliew19673 you can have her check this out, mymsaa.org/ms-information/n...

It also has some links to webinars also.🤗💕

Hope it helps!

J🌠👻

Juliew19673 in reply to Jesmcd2

She has looked at MSaa.org and other such sites and this is where she is getting the notion that I should be in relapse.. But thanks!

Reply (9)Report

jimeka in reply to Juliew19673

All the time I have had PPMS I have never had a relapse, 🦋

Reply (7)Report

Raingrrl

I was diagnosed with RRMS in 1999. I have fatigue every single day: some days worse than others. There is no such thing as a remission in MS. When you have RRMS, you can have a symptom remit, meaning go away, but you always have the disease...no remission. When you have PPMS or SPMS, your symptoms don’t remit and you typically experience new and worsening symptoms at an individual rate.

I think your friend is self-selecting what to read and/or retain. While there are more than enough stories of MS’ers climbing mountains and running marathons, there are also plenty of stories of MS’ers on the other end of the spectrum. Even the ones that run marathons are not in remission and likely have symptoms they deal with every day. Those symptoms may be invisible however. We all experience MS differently which is hard for people without MS to understand. My symptoms were invisible for many years so no one at work knew what I was experiencing every day. They never guessed I had a chronic disease.

My guess is your friend wants to believe that she can have her old BFF back: the you without MS. She doesn’t seem to be accepting your situation I’m sorry to say. A lot of us have people like that around unfortunately.

greaterexp in reply to Raingrrl

Well said.

Reply (7)Report

Raingrrl in reply to greaterexp

Thanks! It’s a hard disease to explain to someone that doesn’t have it. I’ve had it long enough, that I’ve had to explain it many times with varying degrees of success.

Reply (3)Report

Juliew19673 in reply to Raingrrl

I think you explained it better to me, than I have, to her. Thanks for that!

Reply (4)Report

TracyBelle in reply to Juliew19673

At least you still have a friend who is interested in your wellbeing

Reply (4)Report

Raingrrl in reply to Juliew19673

You’re welcome! I’m glad it made sense to you.

Reply (3)Report

mrsmike in reply to Raingrrl

I couldn't have said it better!

Reply (1)Report

Raingrrl in reply to mrsmike

Thanks! I've had lots of practice trying to explain it unfortunately.

Reply (0)Report

1strider in reply to Raingrrl

This is so well put. Thank you for writing this so clearly. After 20 years I have 'friends' who left in the beginning and others who have come and gone. My remaining core are who I spend my precious, limited energy on. They accept me and they get it unconditionally. As for fatigue and some other symptoms my neuro, he does only MS and has taught Duke medical school and research with published books, prescribes some meds off label that have incredible effect on my symptoms. Some are old school meds that are now dirt cheap.

Reply (1)Report

Doubled51

I’ll let you know if it ever happens. So far it hasn’t. Especially the fatigue(tired) part.Good luck with your friend.

Donnie

TracyBelle

I have been waiting 20 years for that to happen

goatgal

Juliew19673 Well, I hate to be gloomy but: in my case, the only relief I have had is having a label and definitions to explain my symptoms. It took me a few years to comprehend that I was never going to emerge from the shadow this has cast over my life and that I would have to live as fully as possible within the limits imposed by MS. Most days, I accommodate to the limits MS places on me, but it is always present in small and sometimes greater ways.

RoyceNewton

ha ha life.