MS relapse indications

[Allen5280]

Hello all,In the past year I have noticed (paying more attention to) pre relapse indicators/triggers. I realized my relapses have a indicator. It came to me because prior to each (past half dozen or so) my lymph flanks underneath my Jaw become swollen and sore. Each time I thought I was getting sick.. covid etc.. so noticing the triggers (seasonal changes, times of high stress/depression) and the indicators are helping me ramp up my medication to stop this bad boy in its tracks. I don't know if this is something that happens to anyone else but it's a thought and possibly a newer thing but I think it's most likely my perception. Anyhow just a thought to pass along...

Be the best you can with this affliction cause it ain't never a walk in the park for me, it's a continuous battle and struggle... hence the term... MS warrior

You ARE a MS warrior

💙🧡

[Amore55]

Yes, it does happen to me too. When I start to feel a bit run down, my lymph nodes in the back of my neck get swollen. It’s an indicator to me to slow down and rest more.

[Allen5280 in reply to Amore55]

Thank you Amore55

[starlight5]

Hello Allen, it's been awhile since I've seen you post. Good to hear from you! thanks for passing on the tip👍

[Allen5280 in reply to starlight5]

Yes it has been quite awhile, my struggles with the mental challenges MS can present silenced me for a bit. I lost my fight and I'm trying to get it back

[Morllyn]

Hey Allen5280 ! Good to hear from you. Take care of yourself!

[Allen5280 in reply to Morllyn]

Thank you Morllyn

[mrsmike]

Good to hear from you!

[Cwright170994]

I wish I noticed any precursor stuff before I had a relapse 🤔 I don't believe there's anything for me to notice, unfortunately. I just put up and power through like the warrior I am. For example, back in Sept 2020, I had my first generalised seizure. That should have been a warning sign as to I was going into a relapse, and I should have made my MS nurses aware of that before having a night on 16th April 2021 where I had 3 seizures, having to be ambulanced to hospital for it, and spending a good few days in a bad post ictal state. That's where my neurologist was able to realise copaxone wasn't working for me, thus had enough evidence to start me on ocrevus, and now I don't think I've had any relapses since then! I don't even have any new lesions as seen from my last MRI in Sept last year! I think ocrevus is giving my body the chance to start repairing the Jackson Pollock painting of my brain 🙏🤣

I do like to say I am an MS warrior! We are all warriors! And I'm proud we are defeating this disease, slowly but surely in our own ways ❤️🫂

[Allen5280 in reply to Cwright170994]

None of f the DMTs I tried worked for me, just the opposite for the side effects were intolerable. Glad Ocrevus is for you

[Cwright170994 in reply to Allen5280]

🫂 thank you, and I hope you can (eventually) find one that works for you 🤗

[Allen5280 in reply to Cwright170994]

I have with medicinal cannabis, I've been DMT\steroid free for over 2 years. My meds were at 12 different pharma now down to 4 and not ever day, 3 to 4 times a week they are necessary. The more I learn about natural ways the less I depend on pharmaceuticals. My goals are to be pharma free

[TrikeMan]

Hello, Allen. Nice to hear/sorry to hear that you have found a consistent onset indicator /trigger to help you manage things. Nice that you have discovered one for you, sorry that you have such frequent relapses. The trick is matching that with a response that is equally and consistently effective.

[irhunter]

Hi Allen, nice to meet you! I’ll be more aware of my nodes now, because of your post. Thank You MS Warrior!

I’ve been using ‘Hold my beer, I’ve got this!’

[Allen5280 in reply to irhunter]

Thank you irhunter

[stepsforNeeC]

Yes, on you're to something! I drop things and feel tired when something is simmering. Now I catch this before it spirals into a nasty exacerbation and slow down, relax and rest.

[Allen5280 in reply to stepsforNeeC]

I still tend to push myself a little to far, just trying to keep up with life's needs.

[Kenu]

Hi Allen it’s great to hear from you 🙏 I don’t seem to have any precursors for my MS. I do have days that I just shut down completely and sleep 😴 for a whole day and then back to so called normal 🤪. I’m am happy to hear from you and hopefully you improve 🙏👍🏼😉

[Allen5280 in reply to Kenu]

Thank you Kenu, its taken quite a few years for me to notice/develop. However I'm happy for the warning now!

[Tazmanian]

Hi Allen I have never noticed anything before an exasperation but I will have to pay attention thanks

[Allen5280 in reply to Tazmanian]

Hello Tazmanian!

[carolek572 CommunityAmbassador]

So nice to hear from you, Allen5280 . I have noticed that as well. You call it being a warrior, but I lovingly refer to it as ‘ms’ bs. Keep Smiling, my friend!

[Allen5280 in reply to carolek572]

Thank you carole572, I've been smiling some... Which is a considerable improvement in itself.

[carolek572 CommunityAmbassador in reply to Allen5280]

🤗

[BlanketTime1]

that's interesting. i've had swollen lymph nodes before getting sick, but never really connected it, so thx!

[Raingrrl]

Nice to see a post from you Allen5280 ! I’m looking at more natural ways too after Ocrevus caused me a lot of trouble. I haven’t decided if I will try another DMT or not.

[Allen5280 in reply to Raingrrl]

I still suffer (after years off the big O) with skin problems from it. It was very hard on me.

[Raingrrl in reply to Allen5280]

I’ve been off I Ocrevus for over a year and my immunoglobulins are still in the dumpster. So technically, I’m still immunocompromised and susceptible to infections. 😡.

Are you still playing your harmonica?

[Allen5280 in reply to Raingrrl]

I most certainly am!!! 🤗

[Raingrrl in reply to Allen5280]

I’m glad to hear that! Music is healing for me…nit that I have an skill with it.

[Allen5280]

I, personally will NOT take another pharma for MS unless!!! They say cure

[falalalala in reply to Allen5280]

You & I both.