How much do you worry about symptoms?

Symptoms and treatments
1

Hello all,

I hope life is ticking over as well as can be expected, considering what we all share. I’ve been away so long that I haven’t been able to log back in with my old username. So now I’m Lara.2 instead of just Lara!

I know I’m not much of a regular contributor, but I do like to check in every now and then, I hope that’s ok with the community here.

I wondered if people have thoughts about how much to worry about symptoms. I’ve had something new going on for about 2 months maybe. A patch of tenderness like I’ve bumped my head, but I didn’t bump it and there’s no bruise or anything, but I have also had a mild headache for quite a while… I tend to think ‘well, it’s MS, isn’t it?’. I get fluctuating symptoms that seem to ebb and flow. Mostly I just ignore them, and describe them to myself as ‘just sensations’. Otherwise I’d be at the GP every few days, and I’m sure we all know how welcome that would be to a busy healthcare professional. I’d rather be someone who she takes seriously when I do turn up, rather than someone who she’s sick of the sight of!

I wondered how you all deal with the uncertainty of what’s serious, maybe what’s caused by some other medical thing that we’re not immune from, and what’s just MS, and part of life to be accepted and tolerated. It seems a tricky one, and I’m not sure if I err too far on the side of acceptance rather than caution?

Best wishes,

Lara

2

i contact my gp when i lose mobility as then i know im in a relapse , all other wee things like nerve pain and the ants crawling under my skin and the twitches i ignore or try to .i see my gp once a month anyway her choice to keep her in with my symptoms.

3

Hiya,
I was diagnosed in december and then had a pseudo relapse in january, which was a bit frustrating because a lot of people said “you’re probably just thinking everything is MS” but I wrote to my neurologist and he said it was likelly that it actually had been inflamed by a cold I had, I was off balance - that whole “walking like your drunk” thing and I fell down the stairs a couple of times.

I think that especially after a new diagnosis its common to be thinking about it all the time, I’ve struggled quite a bit with trying to work out what’s what. I think it’s also really difficult to suddenly be very aware of your body and have to monitor it. In my opinion; put yourself first, I’ve developed a bit of a complex about “looking weak”, I don’t know if thats the same kind of thing you’re finding with being reluctant to visit your doctor? But I’d reccommend going with your gut, also I find that stress irritates my MS so if you share this, maybe its best to get some peace of mind.

I also have a slightly arrogant attitude (which i’ll excuse with being 18) its what your doctor’s paid to do. I used to work in a shop and if someone came up to me and said “can i have this in another size” i wouldnt say “are you sure you need that in another size? maybe you’re imagining it? and can’t you see I’m oh so busy with all these other people who really do need another size!”

kind of a stupid analogy but its how i get over worrying about looking stupid because im saying “sorry to interupt, i think theres maybe something wrong ish”.

i also spent four years going to doctors and telling them there was something wrong with my brain, and their response was to put me on a new contraceptive pill haha, so I’m gonna just go with the sisterhood power approach and say; do whats good for you, naughty word everyone else for a minute, because its your life and your disease and you decide how much you want to talk or think about it, not your doctors rota.

HOWEVER, theres this thing which my mum calls “adjusting your wellness standard” like when someone asks a healthy 25 year old if they’re okay and they say yes, its different to asking an 80 year old if they’re okay and getting the same answer. because the 80 year old probably gets tired quicker and has aches and pains but they have “adjusted their wellness standard” because they feel like that everyday, but on a bad day they might have a cold on top of all that.

that, for me, is what to aim for, to have adjusted to the idea that i may not be as healthy as my other spring chicken friends, but most days im doing pretty okay and if im having a bad day, to be aware of it and think about what might have caused it, and if it worries me, talking about it, rather than thinking “i dont deserve to question this, im just stuck with it” cause thats horse… raddish.

sorry if this is more of a rant than it is helpful,
in short, i empathise with what your going through, and im sorry that its happening to you, and wish you all the best in working out / through your symptoms

Han xxx

hope this has helped a bit

4

Hi Lara, I sort of go on gut instinct. A lot of symptoms just sort of feel like MS… sudden burning for instance or twitching or whatever.

Something like what you describe does not sound very MS to me. Possibly the tenderness yes, but the headache… hmmm… Lara if I were you I would see GP. Doubt if it’s anything serious but better safe than sorry.

Trust your instincts… and the fact that you have posted I think says that your instinct on this one is to see GP.

Pat x

5

Not at all to be honest. I already consider I am doing everything I reasonably can to deal with the condition and the rest is up to MS.

I understand what you say about putting stuff down to MS and suspect many of us do that, but constant headaches must be worth checking out with your GP. Do you drink enough water?

6

Pat and Whammel have given you good advice as usual.

I am a ’ you have got ms so put up and shut up’ type of person.

We are all different but you do sound like you need to see your gp as it may not be an ms problem.

Now - all i need to do is see my own gp because i have felt rough for a while now!! LOL!!

Teresa. x

7

That’s fabulous - I love it!

8

So true, Han, so true]

Not being 80 quite yet. But, the comments like “Oh you do look well” can grate just a bit. We all cope (just about) and we are all different. I don’t have Optic Neuritis, but suppose that I did - there would be a temptation to reply “Well, you can se that but I can’t”.

Quite often, what is worrying us is a small treatable problem to a GP - and if you see them they will treat it. I have just been there, the GP referred me across to a colleague in the same practice, one injection, and within two weeks the problem had gone. If you don’t tell them, they can’t fix it.

Geoff

9

This is one of the weird things about having MS… I remember years ago when I mentioned some new symptoms I was having to my MS nurse… She said why did I not call her about them… I replied… If I rang you every time I had a new symptom I would be on the phone every other day… I have big problems with my urine passing… Who knows it might be prostrate cancer… My guess it is MS… Everyone with MS plays it down… Some people actually work with the disease… How I do not know… The bottom line is that all MS’ers have a very serious condition… It is called multiple for a reason… Never forget this… and never play it down… Good luck…

10

This is one of the weird things about having MS… I remember years ago when I mentioned some new symptoms I was having to my MS nurse… She said why did I not call her about them… I replied… If I rang you every time I had a new symptom I would be on the phone every other day… I have big problems with my urine passing… Who knows it might be prostrate cancer… My guess it is MS… Everyone with MS plays it down… Some people actually work with the disease… How I do not know… The bottom line is that all MS’ers have a very serious condition… It is called multiple for a reason… Never forget this… and never play it down… Good luck…

11

Hello,

Thanks everyone for your replies.

I’m not sure where to start! It’s certainly helpful to have a reminder that I am entitled to something from the NHS, having worked and paid taxes for all of my adult life. For more than a decade I’ve worked for the NHS, consistently putting in more hours than I’m paid for, in the face of demand that always exceeds our resources. It does make me think twice about asking what my NHS can do for me, rather than what I can do for it. It’s worth remembering that I can’t do much for it, if I’m no longer working because I’m ill.

I do what I can to keep myself well. I drink plenty of water, manage my diet (no meat, wheat, dairy, caffeine, etc), try to manage stress (though I confess, I’m not always so good at that one, considering the work I do!), do daily exercises, don’t smoke, etc. So I don’t think symptoms are because of anything I could personally do differently.

I also think it’s very possible that I’m avoiding looking weak. I hate it. In the early years, I had the good fortune of adjustment to MS being primarily theoretical. I didn’t think it was worth getting all screwed up about a diagnosis. Every relapse was followed by a near 100% recovery, but now there’s this mobility thing that’s just not going away. I think the early years post diagnosis didn’t really require much adjustment. I don’t think I ever expected impairment caused by MS to actually have any long term impact on my life. All about positive thinking etc. But now, it’s a bit of a shock, and perhaps I’m going through what lots of other people did when they were first diagnosed.

So yeah, I should just go to the doctor.

Thanks again.

By the way, Han, it’s lovely to hear a young woman talking about sisterhood & power.

All the best,

Lara

12

Hello again,

Just thought I’d do a quick update. Something mysterious about posting here about a symptom that has bothered me for around 2 months. It’s gone now. Either I’m completely mad, or you’re all magic!

All the best,

Lara

13

I check the list of all the possible symptoms that I could have and then tick off what I actually do have, and for the most, I feel quite fortunate, it could be a lot worse for me.

Ok, the lack of sensitivity in a certain area is a pain and does detract from life a bit, but compared to a major bowel misfunction, it is nothing. I can live with it.

Of course I may get some of the more horrible symptoms later on, who knows, but for now I don’t so much worry as feel thankful for being spared the worst.

I guess my glass is half full.

Paul

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14

I try and ignore most of them. Unless it affects me badly. I am self employed and the sole breadwinner in the household. I cannot afford to let MS affect me as I can’t go sick or I will get no money. I have recently worked through a relapse, numb from the chest down and unable to use my right hand, but I am fine now. I just count my blessings that it doesn’t cause too many problems, and I appriciate I am lucky that I can work. There are many more wo are way, way orse off than me!

15

Whenever I get a new or returning symptom my first thought is “oh crap…I hope this goes away again”.

Other then that, I just try and ignore it/manage because worrying about it beyond that won’t make it go away any quicker.

16

Does anybody experience hip and back pain, like a toothache? It comes and goes often within an hour or so. I know not everything should be put down to ms but it behaves like my other symptoms, coming and going randomly.

17

Hi Jacquar

​I don’t know if you’re aware that you’ve replied to a very old post. You may get more replies by starting a new thread. It’s confusing when you’re first on here, but to start up a new thread just hit the button for ‘start a new thread’, give it a title, and post whatever is concerning you.

Personally, I have a major problem with my hip, but it’s unlikely to be anything like yours since I’ve had MS for 19 years!!

Best of luck

Sue

18

Hi,

That sounds like neuralgia. Magnesium is good for that. I had it and started taking magnesium stearate and it went after a few days.

I don’t worry about my symptoms unless they become really bad. If the are just peripheral I try to ignore them and find things that may improve them.

Good luck with it. :slight_smile:

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19

When newly dx, I got fed up with all the fretting about whether this or that was ‘just’ MS or something else new and frightening that was steaming in out of the blue to mug me.

Over time, I think I turned the sensitivity level on my ‘inner health-monitor’ way down because it was all just too boring and such a waste of life. Too far down, probably. So hard to get the balance right, isn’t it? It is a lucky person who manages to get that one just right!

Alison

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20

And I don’t know why that has appeared as ‘anonymous’… that was me, Fracastorius (Jane) posting that above.

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