Last reply 1 month ago
Relapse Symptoms

Dear All,
Hope you are all safe and remaining healthy in this lock down,
I have a very strait forward question.
Is there a period of time for a relapse to form or strike in other words, how long does it take for a relapse to occur?
Three years later after having my first relapse, I started having some very mild pain on my right side behind my right ear right abdominal . This has got slowly and gradually increased together with the other symptoms and now I feel like relapse is not too far away. These symptoms were not picked in the MRI.

Please share your knowledge and experience with me, because i could not find any article or info regarding the brewing period of a relapse.
Thanks

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ralee
2 months ago

Now, I’m not sure how accurate I’m going to be but this is how it was explained to me.

So essentially a new relapse is more damage to the CNS, which will take the form of Lesions/Scaring/Sclerosis etc on an MRI. When I asked my Neuro how long it takes for a lesion to form he said ‘hours’.

A relapse is classed as new or worsening symptoms that last for at least 24hours and 30 days from a previous relapse.

You might already be having a relapse, contact you MS nurse if you have one to talk in through.

I hope you feel better soon


ruggermad
2 months ago

@upsanddowns Hello – i’m no expert but I can give you some insight of what happened to me on my second relapse last year. It was my second ever “major” relapse where I actually developed some form of disability for a while. I say for a while as in both cases where I have had relapses to such magnitude, my limbs returned to almost normal (well 95%).

Last year I went for a walk around the village, I have done the walk (approx 30 mins) daily for the last 5 years, with no problems. On this particular day, I didn’t feel right, I started walking and I suddenly found that my gait was all over the shot. My legs didn’t seem to want to move in union and I was shuffling about. At the end of the walk when I walk the final 10 minutes up a slight incline to my home, I might as well have been walking on a escalator the wrong way, I was getting nowhere and was feeling exhausted.
I finally managed to get home and had to sit down to recover. My left leg was getting number and number. I sat for about 45 minutes before I needed to head upstairs to the toilet. It was at this point when my leg completely gave up the ghost and wouldn’t lift up by itself. I had to pull my leg up to get it to move and climb each step lifting my left leg in the process. This had never happened before and it was really scary. Timescale wise this happened within a few hours of my leg starting to feel weird.

To cut a long story short, this episode lasted for a total of approx 7 days with my leg slowly returning to “normal” (about 90%) and walking without having to lift the leg manually. When I phoned my MS nurse to say something was up I got the normal “it’s not a relapse” “rest up for a while and see what happens”. Typical dismissive response which I seem to get.

I can’t comment about the relapse showing up on MRI as I haven’t had one for about 30 months. The only thing I can say is you are probably a good judge of something not being right and will know if something is up. I seem to get a fuzzy head feeling days before a relapse seems to strike and sensations like the MS hug tightening around my chest.

Good luck and take it easy.

P.S. – my first relapse happened suddenly overnight while I slept and I woke up with a numb arm, but thinking about it I did have very mild sensory symptoms for about three weeks prior, bit like an itchy arm.


stumbler
2 months ago

@upsanddowns , for an mri to show current activity, a contrast dye would have to be used.

Otherwise, MS is an unpredictable condition. Your Central Nervous System (CNS) can be “nibbled away” by the MS without causing any noticeable symptoms. It’s sneaky like that.

So, there is no answer to your question. But, you don’t want to spend your life thinking, “this maybe a relapse”. The additional stress could actually bring on a relapse!

The following may be useful :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses


upsanddowns
2 months ago

Thank you very much to all of you indeed. It is just soo tricky and would becomes worrying as we all know. The real problem is i can nor find any published article on that, which would shed a light on how long it takes for a relapse to form or a research on the time span of a relapse formed. They all define what is a relapse , …

Thanks alot indeed
stay safe everyone


cameron
2 months ago

Does your hospital not have a relapse clinic? What I’m getting at is that your team need to be on the ball re: what’s going on with your MS. Depending on whether they classify it as a relapse, your treatment drug might need to be changed. And the first step to that is to get it recorded in your medical history. If your team is a bit slow, you need to present them with a symptom diary. Getting the help you need is of course complicated by the virus situation – not easy.


vixen
2 months ago

Hi @upsanddowns, I have exactly the same as you. I had my first relapse three years ago, stable since. This year I have felt generally ‘shabby’ and my walking has slowly gone through weird stages but is generally worse. However, despite logging in with MS nurses, repeatedly told it’s not a relapse. Had an MRI which confirmed no new lesions but am way more reduced in walking than ever. So I don’t know if I’m relapsing or not. However, three years down the line. I kinda don’t care, as I know nothing can change the course or improve the outcome. I therefore rest a lot, eat well and try to exercise gently United we stand! 🙂


cameron
2 months ago

Another thought occurred: I printed and have kept as reference an article on the Barts MS blog (Wednesday 12 Dec 2018: ‘Explaining why you get worse despite No Evidence of Disease Activity’) which I’ve just looked out and which you would find on that blog archive. It might help distinguish between ongoing degeneration and an actual relapse, when to all intents and purposes the effects felt might be identical.


stumbler
1 month ago

itsmewithms
1 month ago

I was Dx in 2005 with RRMS. For at least the first 10 years after that I would have definite attacks where I would just suddenly have a new symptom or a varied return of an old one. Usually it involved balance or gait but once was speech. Each time I would have an MRI and there was activity on my MRI (shown as a new bright spot, contrast MRI, etc.) I would get a massive series of steroids and the symptoms would pretty much go away within two days. It was very effective and I would carry on as usual.

Over time I just had a very gradual decline in ability. Nothing dramatic and nothing that I even noticed very much. I just stopped doing activities that were now harder or no longer fun. This can be identified as when I started to move more into SPMS, a more progressive phase of MS. Kind of a bummer but at least more predictable. I no longer had sudden changes in what I could do or expect from a day.

I need to keep up my “reserve”, continue my treatment and push as hard as I can with PT and work to retain my strength and abilities I have. All the good stuff…diet, exercise, DMT, good sleep, reduce stress, etc. in a very conscious effort.

I think the “leaky pool” model describes it best and is what I share with friends/family to help them understand. Maybe it will help you? https://www.youtube.com/watch?v=mp8qRPiCnNs&t=29s

But- we all write our own book and tell our own story. It is a very individual journey and one person’s experiences can’t define or predict anothers…we are all special little unicorns 😉


upsanddowns
1 month ago

Thank you ever soo much, everybody i really appreciate your help. I have also been reading around and kind of found the reason for worsening of my symptoms which is the period that women go through between the age of 45 and 51 and 2. During this period Ms symptoms gets worsened and the disability level increases, however there is not much data or research paper exist, so I only found from MS society website. Now the question is do those symptoms trigger a relapse and do I need hormone treatment and if so does it help my MS and how? So many questions …

Thanks everyone
stay safe

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