Question from the "Peanut Gallery" - My MSAA Community

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Question from the "Peanut Gallery"

Juliew19673
Juliew19673

I promised my Best Friend that I'd pose this question to this group: "How long did it take from your DX to feelING better and not tired?" "When does the break from this disease come?" (She seems to think that I should be in remission, as if I have cancer).

I've tried to explain to her that it's a life long disease, and she always responds that she has read countless stories of people who have had it for years, but that have no limitations.

I've been DXED for a whopping 6 months, and feel 70% better now than before my DX, thanks to DMT. I still get tired, but NOT like before. My Neurologist does not know which form of MS I have yet - guessed at PPMS, but we will see. I tell her most seem to be able to get through their days, but deal with their issues privately. I think this disease is harder for her to accept than for me.

OK I did what I said I would. Any suggestions on how to get her to "SHUT UP" appreciated.

17 Replies

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.

Jesmcd2
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
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!

jimeka
jimeka in reply to Juliew19673

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

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
greaterexp in reply to Raingrrl

Well said.

Raingrrl
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.

Juliew19673
Juliew19673 in reply to Raingrrl

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

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

Raingrrl
Raingrrl in reply to Juliew19673

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

mrsmike
mrsmike in reply to Raingrrl

I couldn't have said it better!

Raingrrl
Raingrrl in reply to mrsmike

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

1strider
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.

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

I have been waiting 20 years for that to happen

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.

ha ha life.

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