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Length of relapses

Would you mind sharing the average length of your relapses? My first one seemed to last a few months before settling into a routine roller coaster. I just had three days that felt like a relapse, mainly increased fatigue and cognitive problems, but I didn’t call the neurologist since the symptoms were relatively mild and short-lived. I probably should have called.

What have been your experiences?

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I don’t have relapses, so sorry I can’t help, but I hope and pray that you are ok. 🤗 🙏

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I have to say I new something wasn’t right but really didn’t know that it was a relapse. After I read about relapes I knew I had one. I am always cold and on the day I had it I was hot and my husband was cold. I say it may have lasted two days.

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I think I had a relapse about a month ago I think it lasted a few days........ then went I just felt rotten............still can't explain how I felt 🤔🙄🤔🙄🤔🙄🤔🙄😠😠😠😠😠

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I think I understand what you mean. With this last episode, there was this odd general feeling of "yuck." I hope you're feeling better now.

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Thank u hun I'm feeling better it was just weird my MS nurse said it sounded like a relapse. And of course it was on the day occupational health and work......was so not impressed! 🙄🙄🙄🙄🙄😠😠😠😠😠 hope ur feeling better aswell xxxx

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I'm so glad I'm not the only one who can't differentiate a relapse from a crappy day. My symptoms are usually insidious, not sledge hammers, and sometimes they are very transient. Bad for a few hrs. Then ok. And then back again later in the day unrelated to overheating etc.

I have no idea if/when to call the neuro and just try to push thru it. Recently crappy symptoms have been lingering and accumulating for weeks now.

These changes have never revealed as MRI changes.

This disease is too nebulous for my liking 😬

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Exactly! Even when in the midst of the first relapse, none of the numerous lesions they found on the MRI "lit up." It's all so confusing. The published definition of relapse just doesn't apply every time, and I'm not sure the doctors are quite clear about it. It seems there is just so much we still don't know. I find myself wishing that MS could be like other, clearly defined diseases which have clear symptoms and test results.

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Be careful what u wish for...At least there’s hope with MS even if it may be a miss leading hope

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U are definitely not alone with the strange relapses erash xxxxxxxx

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This is what MSAA says about a Relaspe.

help you recognize if you are experiencing an MS relapse, you might want to ask yourself some of the following questions:

Have I been experiencing this symptom for at least 24 to 48 hours?

Do I have a fever?

Am I recovering from a recent inflection, such as a urinary tract infection (UTI)?

Would I rate this symptom as significant (i.e., loss of vision, unable to walk, etc.)?

Did I exhaust myself today by doing too much?

Was I in a very warm environment?

Was today an unusually stressful day?

Did I take time to rest and let my body recover from the day’s activities?

And it doesn't go away.

greaterexp I hope you feel better. Give your Neuro a call if it doesn' go away.

🤗n💕

J🌠

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This is a really good topic and one I have struggled with since diagnosis. Although I had many symptoms, including tingly numbness, throughout my 30's and 40's, they never lasted long enough to be of concern.

My 1st relapse, in 2010, was numbness in left pinky finger, hand/wrist and balance issues. The numbness lasted for almost a year then disappeared but the balance problems remained. I was recovering from a broken ankle/surgery so I thought the balance problem was from that as I was told my MRI was clear.

The 2nd in 2014, which led to diagnoses, was right side numbness, weakness (foot drop), gait, fatigue, bladder, spacticity, and increasing balance issues. The numbness/weakness continued to spread for over a year until was from head to toe. All symptoms remained.

The 3rd, the only time treated with IV steroids (which didn't seem to help), was an increase in existing symptoms and then new left side numbness and weakness which continued to spread for about 4 months. All new symptoms remain.

Heat, cold, stress, lack of sleep really affect my symptoms now. So although there have been many times since diagnosis that I wondered/worried if an increase of existing symptoms was a possible relapse, I tell myself that from now on I will only get concerned if it is a new symptom that lasts for several days. And then I will call my neuro, but unless severe I don't know that I will do steroids again as they didn't seem to help with last relapse.

Everyone's relapses are so different and individual. I feel like mine come on gradually, like they sneak up on me and it takes a while before I realize what is happening. Only when a NEW symptom appears do I really take notice. Hope this is of some help.

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I agree with you and erash in having a hard time differentiating between symptoms which worsen for a fairly brief time and those which constitute a relapse. I know what the technical definition is for relapse, but many of us deal with worsening symptoms that last for over 24 hours. The symptoms I had recently of difficulty performing tasks or staying with a conversation, even briefly, and the need for extra sleep during the day couldn't be blamed on anything like heat or stress and came on fairly quickly. I only experienced the deep mental fog like that during the first relapse. I hate calling the doctor now, since things seem better, but have made a note for my next visit to discuss it with her. It does make me more interested in treating my MS more aggressively with something like Ocrevus.

Thanks to everyone for responding. This thing has us all second guessing ourselves much of the time.

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Lois52 Thank you for the clarity of your descriptions. Your experiences are similar to mine. I've had symptoms since my 20s (I'm 77 now), but with the exception of trigeminal neuralgia and optic neuritis, they never lasted longer than a few hours. Though the lesions on my brain and spinal cord, as well as the lumbar puncture all indicate MS, by the time I was diagnosed seven years ago, I was told there were no effective DMTs for my age group. So here I am, with foot drop, permanent vision changes due to Optic N, an "impaired gait" due to balance problems/numb-stiff feet/foot drop, and acquaintenances who have other friends with different MS symptoms seem to feel that perhaps I don't really have MS. It is a baffling disease with myriad different presentations, and so difficult to convey to some of the people we know. My MS is subtly symptomatic, but it is real. I am deeply grateful to the forum and to those who share their experiences so honestly here. You keep me connected and save me from isolation.

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I am still dealing with my first relapse it started Dec 2016. I didn't get help til Feb 2017. I felt it would go away it was just a spasm and I was trying to hold on to someone who didn't want me. Lesson learned. I feel if I hadn't ignored the symptoms I would be much better than I am. The process of healing is taking forever.

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Hello all I recently found this dr Ben Thrower MD on youtube and i was listening to some of his discussions on MS and he was saying that sometimes the mri don't show signs of activity but the patient is having signs of a flair up. it was kind of interesting, on some of the things he was talking about. If you like check him out and maybe it can help with some questions you may have, or confuse you more lol.

I just downloaded the MS Relapse Tool Kit. Just glancing at it I believe I have been having relapses off and on for months now. I go see my nero next week. Mines seems to come on often and last 3-6 days. If I totally rest for a whole day they seem to last for about 2-3 days. Man what a trip I've been on when they kick in. coughing, can't breathe, barely able to walk or talk from lack of air. Chest hurt and heavy, head feels like in a vice grip. No will power for anything. The worst feeling ever.

On top of that i got back blood test result and my dr tells me that my white blood cell are very high and she is concern. wants me to repeat blood work two weeks. could it be from maybe having a relapse? I pray I don't have anything else going on. I'm already dealing with MS and Raunards.

But hey, my head is up and I'm still thankful that I am waking up each morning and still able to do what I do each day. Go to work, drive, and so on.

Have a great blessed day everyone

Lissa

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Hope ur feeling much better Lisa...........hugs from the UK and also muddling through the MS maze 🤔🤔🤔🤔🤔🤔🤔

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thank you janetb1968. Some days are better than others. Hope all is well with you also.

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@lissaH can u tell me more about the breathing issues u have? I've been having that off and on for about 2 yrs now. Pulmonologist has said lungs fine, neuro says breathing is usually a symptoms of late stage MS so it isn't likely my MS, cardiology testing was also normal until last week when they did a new test that checked both my breathing and heart while exercising and that suggested my lung function was restricted. Going back to pulmonologist Monday. I think it is MS causing weak breathing muscles but that's just my theory.

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Hello erash, I myself went through all that and test, after test, after test and nothing. Everything came back normal. Dr have no idea what is causing it. Feels like the worst case of asthma and heart attack, I don't have it and never did. Than in a couple days im back to normal. Its weird. Doctors gave me an asthma pump, has done NOTHING to help. So lately all I've been doing is sitting down and trying to control my breathing and settle myself down. It takes a long time but I manage to get control. like I said I go see my nero next week and I will be letting him know about it.

I wish you the best of luck with yours and i pray that we can find some relief.

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Last one lasted about 2 months before neuro finally admitted it was a relapse and ordered steroids. I saw him Tuesday and he thinks I’m having another because I can’t last over 15 mins standing walking or doing anything. Absolutely so weak I can’t do anything due to this weakness. He said if I wasn’t better in 2 days he was ordering another round of steroids. I’m sure not better today so if tomorrow’s no better another round of steroids will come quick this time. I guess or discussion last round did some good. But it’s frustrating only being able to do anything for 10 to 15 mins. So if things stay the same another day we’ll do more steroids if problems persist we’ll consider changing DMTs. So getting on his case finally stirred him up.

Donnie

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My goodness, Donnie. You’ve sure been through it lately. I’m sorry. I’ll be praying for some relief and a return of strength.

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I know right. I’d been doing pretty good the last couple of weeks then out of the blue this weakness sat in. I went to wash my hands for dinner last night and had to sit on the bed and rest before I could finish

Your prayers are appreciated

Donnie

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Donnie, wow I find myself feeling the same way. I'm great one minute than from out the blue, it hits like a ton of bricks. I'm out for the count. I cant do anything but try to catch my breathe for awhile. Its bad because you never know when it is going to hit. this is all new to me and its been happening since January. I don't know maybe i need a steroids treatment. we will see what the neuro say on tues. Only thing is I live in New Jersey and my neuro is in Philly. It would be a little hard for family and friends to come and visit if he keeps me. Well some of them. Most wont mind the travel. Its not too bad an hour drive, depending on how you drive. My family have a heavy foot. HaHa

Pray you will get better soon.

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LissaH . I just had my 1 year anniversary on April 1st so it’s still a little new to me also. I had steroids about a month ago and they had a burse come to my house and set me up with an iv and taught us how to do the next 2 ourselves so I didn’t have to leave home. Good luck to you.Donnie

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I don't really know how to answer that. I had lhermittes for weeks with vertigo and nausea, but the lhermittes improved over months. My next one was painless optic neuritis, cognitive issues, and uthoffs, which never went away and from what I gather they never will.

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I’ve had vertigo and fatigue since the beginning but ive never had weakness like this. I can’t stand up 5 mins at a time even if I don’t do anything. Neuro said if this persist we might have to consider changing dmts even though last 2 MRIs show no change. And repeat MRIs which I certainly don’t want.👍🙏🏻👍👍

Donnie

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wow praying for everyone to get some relief soon.

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What is going on with everyone about 3 - 6 years ago when I was working I kept on having what I thought was asthma attacks I could have 1 to 2 a day but now I am not working I might have one maybe 1 a month. And those are from sucking in water or air in too fast. I think what was going on at work was STRESS because the great majority of them has stopped. Donnie are you having any stress in your life and you know it could be something so miner you might not think it's bothering you. But then again I'm no doctor. Mine use to be so bad I would get my asthma going and I would be going off in an ambulance. But that has stopped, I'm not at work any more. I hope you find out what is going on.

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ssdw1958 . Stress is my life. 😇😇

But I don’t see it ending anytime soon so I just have to deal with it for now. But things are getting better.

We have a vacation scheduled for the end of May and I can’t wait. 😇😂😂😂😂😂😂😂

Donnie

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I know what you mean about the stress it seems to follow us know matter where we are. I am glad that you are going on vacation I hope you have great time and great weather.

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