What were some of your symptoms during a relapse?

[anon07072023]

Hi everyone, Can you please tell me what were some of your symptoms when you had a relapse? And whether or not it led to steroids being prescribed - oral or IV?  I don't mind if it's brief...I'm just wondering....

Thanks so much for sharing,
Kelly  

[anon07072023]

My neuro does say that any symptom that lasts more than 24 hrs is a relapse. Like I said, I tell her that I always have symptoms. And then she tells me it's a relapse if they last longer than 24 hrs. She doesn't get it. They're always there. She always gives me a funny look.

And she just says that my symptoms must be just the remnants of my first relapse. NO, I never had a major relapse. The symptoms that I have now are way worse than my initial presenting symptoms.  I guess one of the downfalls of not staying with the same neuro.  They don't get to see your progression from the beginning.  Plus, now I'm on the max amount of Baclofen and tons of other meds.

Similar to others on here, I never know when to call to tell her about my symptoms since I always have them. I keep a daily journal and every single day for the last couple of yrs have multiple symptoms written down. Sometimes they're worse or they move to a new place, and I highlight those in yellow.

My neuro did say this time around that it kind of sounds like a new relapse for me.  Now, it's just trying to convince her to let me have a 3T MRI of my spine, so she can see what I see and what all my previous neuros saw with the lesions in my spine. ho-hum.      

[tingletingle]

Interesting stuff. I really feel as if I've caught the JJ strain from 09. Not quite as bad but very close with stuttering, tremors, poor walking, cognitive issues and other stuff.
I have counted eight episodes over the 12 months where I experienced new symptoms or at least five or so days of heightened symptoms of the above. But this doesn't include all the 'mini' stuff that happens each 10-12 days that lasts 24hrs.

[supermum_ms]

My big bang was in 09 and since then i've never been sx free, before then i definitely had a more than a few of my today sx that came for a period and then totally disapeared. Even my same place spasms and tremor(s) would come and go, i actually felt but couldn't see the kinetic (against gravity) on and off for at least 3 years before it became perminantly visible in 09. That one screwed up my mobility, visual and communication abilities, they each can take a dive but still they get better, though never has a day gone bye with out them here.

It was the same relapse that changed my verbal skills, never ever had anything even remotely like it happen before then, thats when i first started stuttering/slurring. Its one of the first things to come out when i get fatigued, talked a lot or eaten something like steak. lol um sort of can't really forget walking like a string puppet and yet I do, its now just the way i walk 98% of the time.

I haven't counted these periods of increased sx as relapses because they weren't everything altogether, no triggers but apparently i should have, which has been a kick and a half. lol So far this year ive had (from 3 days to just over 2 weeks) horrid intercostal muscle spasms, worst ever face pain, and most recently i was unable to get a single word out with out it getting stuck. I also couldn't communicate very well typing either, sentences didn't come out right either way, brain fry again too.

I've been dealing with vertigo for almost a week, its tanked my walking but everything else is basically my norm, still wont be counting this as a relapse though because i've got a bug so there is a trigger. It makes sense to me (though maybe no one else) that when i've already got proprieception (sp) issues, this bug is effecting this and once my ears are no longer stuffy it will go back to my norm.

Cheers......JJ

[Guitar_grrrl]

My last two major relapses (2005, and 2009) started with total loss of balance.  I had to keep my hands on the wall or DH's arm to get anywere.  The one in 2005 was followed by 3 weeks of Trigeminal Neuralgia, and the one in 2009 was followed by 3 months of severe weakness (bilateral).

Ever since the one in 2009, there isn't a day that I don't experience spasms of my legs or ribs (the dreaded "hug"), weakness, and hit-the-wall-fatigue once or twice a day.  Truly sux!

[AMO]

I hohpe all of  you are feeling better today.
When i had steroids they seem to not respond at all. I had many rounds of 5 day,  and before the monthly for over six months. I stopped doing them.

I must be a bad patient too :(  I stopped calling my neuro for anything new. I was calling so much and      I seem to just go over all of it m y my schedule appt  time. Maybe that is why he has me come more often he knows  i won't call typically now?? hum.
am  o

[supermum_ms]

Seriously cr@p, you've just blown my "I'm fine, its not a relapse " totally out of the water!!

Sulking.........JJ

[Lulu54]

A relapse doesn't have to be dramatic and take away your ability to walk or talk or see.  If you have a change - any change - in your physical condition that lasts more than 24 hours should be taken seriously and reported to your neurologist.  :-(

[supermum_ms]

"Any change in your condition that lasts more than 24 hours may be considered a relapse" thats meaning without a cause, eg like heat, UTI, infection, really over doing it, virus etc, right?

Its too hard for me to get my head around it otherwise, I dont think relapse when 'something' has set it off, i just see it as psuedo's because once the 'something' has gone, i go back to my normal, which granted isn't normal normal but you get what i mean. Well most of the time I bounce back, if the 'something' was bad or went on for weeks, i can start to feel better and within a few days i just get worse than i was before and no sign of the 'something' anymore. Thats when i think i've been pushed into a relapse, my immune system has just forgotten to stop attacking.

Cr@p, i dont count it as a relapse unless 'everything' is at its worst, sometimes with a new one thrown in for kicks and giggles. If it doesn't have to be 'everything' to be considered, then the other month when my verbal and other communication skills, took a dive to their worst ever but my walking was as it now is, would that of still counted even though it wasn't everything? I'm hoping your going to say NO!

Sorry Kelly but i thought i had this one sorted out, um do you still want to know mine, when i'm confused all over again?

Hugs.........JJ

[anon07072023]

L, I heart your neuro. He sounds like a good guy.  Those are all really good things to keep in mind.  A while back I was trying to explain to my current neuro that I must always be in a relapse because I constantly have symptoms and they seem to be going slowly downhill. It's hard to understand.

Marell, I have done yoga previously. It seems everytime I try to do it, it kills my neck.  I have a bone spur in my neck and degenerative disc disease.
I have gone to PT for my spasticity, and she gave me some really good exercises.  

[Lulu54]

Two weeks ago at a routine appointment my neuro just shook his head when he asked why I hadn't called about being in a relapse and I replied I thought I had just experienced a gradual decline and not a relapse.  He pointed out that ANY change in our physical condition that lasts more than 24 hours is a relapse.  Period.  It doesn't matter if it is gradual or if it is sudden.  Or if it is mild or more debilitating.  

I just smiled at him and said I should have known better and thought to myself I tell all of you this all the time.  It was just impossible to apply it to my own condition..

Any change in your condition that lasts more than 24 hours may be considered a relapse.

[Midijane]

Thanks for the opinion. My follow up is less than 2 weeks away. And I was just wondering after reading your post, are you able to try yoga to halp loosen up muscles?

[anon07072023]

I have symptoms every single day. Each day my legs feel stiff and weak and I have the constant tightness & pain in my pelvic floor, hamstrings, hips, etc. Fatigue is also a big one with cognitive issues.  My hips hurt so bad all of the time.  I do also off & on get the squeezing pain around both sides of my ribcage & blurry vision.

I guess with this time around the symptoms are different than normal, which made me think of a relapse. Thanks for sharing your symptoms.  

Marell, thankfully my LP was a breeze.  No problems at all with it. I'm not sure if the LP / blood patch could have stirred things up.  My guess would be more related to whatever you have going on that led to the LP.  You know what I mean?  I hope you can get into a neuro soon to discuss all of this.  Good luck.

[Midijane]

Im not officially diagnosed at this point and Im keeping an open mind as to why I feel so strange. I had an LP on Monday, a blood patch for a spinal headache on Wednesday, and Thursday I woke up intensly buzzing again with more dizziness, and an episode of weird muscle weakness where I had to double over and concentrated to stay standing upright. I was shaking like a puppet and aware the muscles on the front of my body were weak, but the muscles along the back were fine. It was like gravity was trying to pull me down, but I was trying to fight it. Thats probably not the best description of how funny I must have looked but thats the best I can do. Ive also just noticed my left pupil is irregular like my doctor had mentioned. (Sigh), all in a day :).

My guess is the patch on Wednesday stirred something up and now Im buzzing again for awhile. What do you all think? Other than just resting, any suggestions to help things quiet down again?

Thanks as always,
Marell

[jensequitur]

Relapses are weird.  Usually it's at least one symptom that lasts longer than 24 hours and is new, or old but went away and is now back. Sometimes it's three or four symptoms.

I get weak limbs, electric shocks, creepy-crawly scalp, tingling, myoclonus, optic neuritis, muscle spasms, cognitive problems... pretty much a grab bag.  I've never had IV steroids.  I had oral steroids for my first flare, which was pretty awful.

[jujuminx]

My relapses have been anywhere from mild numbness in leg, foot, and hip to MS hug, weak arms, electrical shocks, twitching, feeling like walking on rocks, and spasticity.

Yes, steroids the last relapse when I got dx. Oral steroids but technically it was and IV kind that I drank. I know, weird but was told my my neuro, the pharmacist and my gp that statistically it was just as effective as IV. I was given the IV option but opted out.

Did it help?  Hummm, well I guess it did a little at first but I was getting a bit better day by day anyway. If I had another relapse, I would do it again.

Hope that helps and good luck.

Julie

[saucygrl]

I'm pretty sure I'm having a relapse now.  Like Mike, I'm having increased left side weakness and severe pricklies, lack of balance, cog fog, and vision issues.  I reported it to my neurologist and she told me to take my blood pressure every night.  Hmmm....I went to acupuncture this morning and so far I'm feeling a bit better so I'm hoping a few more visits will be all it will take.

Chris

[Mike_Shuswap]

Four days of intense MS hug, increased left side weakness and uncoordination which got a bit better over time, and increased cog fog.

I reported this to the MS nurse at the clinic. She said there are drugs available for 'banding', but didn't recommend them unless the banding didn't go away.

My neuro was notified but did not offer steriods. When I saw him a couple months later for my anual check-up, he said it had been a relapse.

Mike