Forum

RRMS - can symptoms stick around

hiya!
I am currently undiagnosed with a type of MS. I know I should just wait and see but I’m not the most patient of people! I was just wondering if anyone could enlighten me on something. I know that after a relapse symptoms can stick around but does that symptom have to be related to your relapse? What I mean by that is if your relapse was painful / weak legs that you couldn’t walk on that lasted a couple of weeks and then a fine tremor, muscles spasms / twitches developed too, could the weak legs / painful legs go away but the tremor, spasms and twitches still be there months later? Or would they go completely? Also could you still have sensory symptoms like pins and needles that come on every day or would this not look like RRMS?

Thank you in advance for any insight!

  • G

Good afternoon, did you manage to get any insight to your symptoms?

my on going symptoms have been happening for 3 months too. Mainly the last 8-9 weeks, symptoms keep coming and going. But I’m still having the daily twitches, and tremors in my head, legs and arms depending what position I move them into. But like you. Some symptoms come and go daily (which I do think is normal) but the most worrying part for me is the constant tremor issues.

Hi there, I myself have had numerous symptoms for years, ( undiagnosed probable Ms and apparently ME). In the past after my ‘episodes’ most of my symptoms left,I found myself dragging my left leg around for months and fully recover. In January this year all my symptoms,burning,pins and needles,tremors,back pain,vertigo,muscle twitching,severe fatigue,muscle weakness and numbness,cognitive problems,speech problems,optic neuritis,shocks in spine, spasms,bowel problems,trigeminal neuralgia, crawling sensations and other things have stuck for the whole year! ( I have has bladder problems for years) firstly urgency now I ISC as I have bladder dysfunction. I have always had episodes of depression.under neurology and urology. I am now in wheelchair. I can’t walk far with my stick as I have constant pain and burning in my legs with pain and heavyness. I was housebound for around 4 months.I have an occupational therapist who has got me so many aids and adaptions. I also have neuro physiotherapist who comes to my home. I recently had another MRI has I have an excessive amount of lesions on my brain and spine. Apparently neurologist is looking for new lesions and he is unsure and really is confused. I have a EMG and lumber puncture coming up.I also see the bowel surgeons in regards to my bowel issues. My diagnosis is not solid as yet. My mother and sister have secondary progressive and primary progressive MS. My symptoms have stuck around for all of 2019…it’s been a long road coming to terms not being able to do much. Having to learn to pace myself etc. I don’t know if I will recover from this one…everything just progressed so fast. Not sure if they will go away. Taking gabapentin, backofen,carbamazepine and naproxen (as and when needed) takes the edge off sometimes). Lina

Some people are lucky and their relapses resolve completely, particularly early on in the disease course - but this can take some time and different aspects of a relapse will recover faster than others. Less lucky people find that most or all acute relapses leave some lasting damage behind, when the acute phase has resolved as much as it’s going to. There’s a lot of variation.

Alison

1 Like

Hi Allison.

can some relapses last a few months, with the symptoms coming and going daily. I get random new numb sensations on my body. Like last night I had feelings of numbness on my stomach, lasted a few minutes then left.
it’s been like that for the past 11 week. And during a relapse can new symptoms appear even after weeks after the initial on set of symptoms?

its all very confusing and I’m getting more worried mine isn’t going anywhere. I have my scan on Sunday. And I know I need to be patient and wait for the results. But it’s hard when I’m experiencing new sensations, and have been since middle end of September.

thank you

stacey

1 Like

I am no expert and have only my own experience to draw upon. My big relapses have followed a fairly classical pattern of building, peaking and resolving over days or weeks, but those can sometimes come in overlapping waves - as one thing starts to resolve, the one behind is peaking and the next along is warming up.

Having said that, in the very early days of my MS and at other times when it has been particularly active, I have had things come and go on a much shorter timescale and in a less orderly way without ever coming to much, and not always just because I’ve got overheated. Overheating will tend temporarily to point up MS damage that isn’t obvious in normal temperatures. Warming up and cooling down can make it feel as if things are coming and going when what is actually happening is that the problem isn’t obvious when cool becomes temporarily obvious when a person is overheated.

I think it is probably fair to say that discrete relapses along the classical lines are regarded as much more typical of RRMS than more random stuff that comes and goes and could be caused by a thousand things. .

But as I say, all this is just what I have come to understand about my own experience.

I am sorry that you are having a worrying time and hope you get some clarity soon about what ails.

Alison

Alison

1 Like

StaceyLeigh,

Our symptoms seem really similar. Have you had any tests yet? I’m waiting on Spinal MRI and Lumbar puncture. My neurology consultant said my “constellation” of symptoms may be MS but could be many other things.

I have fatigue, weakness, tremors in my hands, arms and head, muscle twitches & jerks, weird sensations (numbness, crawling, pins& needles) dizziness (comes&goes).

I have no idea how to manage as I was perfectly healthy before and this has had a huge impact in my ability to look after my kids and on my career, with no obvious answers. I’m reasonably positive but so worried about the lack of answers…

Are your tremors obvious? People regularly comment on mine (which I find really tough).

StaceyLeigh,

Our symptoms seem really similar. Have you had any tests yet? I’m waiting on Spinal MRI and Lumbar puncture. My neurology consultant said my “constellation” of symptoms may be MS but could be many other things.

For the last 3-4 months I have had awful fatigue, weakness, tremors in my hands, arms and head, muscle twitches & jerks, weird sensations (numbness, crawling, pins& needles) dizziness (comes&goes).

I have no idea how to manage as I was perfectly healthy before and this has had a huge impact in my ability to look after my kids and on my career, with no obvious answers. I’m reasonably positive but so worried about the lack of answers…

Are your tremors obvious? People regularly comment on mine (which I find really tough).

Good Evening muddling through.

i literally had my mri scan last night for my Head and spine. So eagerly awaiting those over the Christmas period.
yes our symptoms seems very similar, I don’t have the dizziness however or the fatigue. But over the past 3 months I have experienced many different sensations. The tremors are not noticeable really. They are more shaking like weakness when I stretch my legs or arms up in the air. My head tremor is when I slowly move it to the side, when I straighten my head my head will tremor for a few seconds. So strange. This has been ongoing for 4/5 weeks.

I think from reading a lot of stories on here, it can take some time. And we have to try and remain calm and be patient. Christmas is almost here and need to try and enjoy it. The unknown is the hardest part, and causes anxiety which can heighten a lot of symptoms. I’ve been having my ups and downs during the days.

im almost sure mine is MS, but like your neurologist says it could be various of things. And these take time to determine what the underlying issue is.

if you need anyone to message, private message me on here I’ll be happy to talk.

stacey