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Newbie here with some newbie symptoms!

Hi everyone my name is Stephanie, and I have MS and was diagnosised around 8 years ago.

ive mainly had vision problems and problems with movement, physically I felt fine until around three weeks ago my ankles swelled and now Im in pain my body feels bruised and battled, lost my appetite, my joints seem to hurts or rather my bones feel bruised. I’m finding it difficult to walk and get around which is a new world for me can somebody tell me is this normal in Ms ive had lots of bloods done and chest X-ray all have some back fine. My daughter is worried sick so thought maybe somebody could tell me if its normal to help me and my family understand.

Stephanie

Hi Stephanie,

I don’t want to scare you, but I don’t think it is normal, no. You’ve been diagnosed longer than me, so probably have more idea than I do.

Relapses can take many forms, but I don’t think visible swelling anywhere is a usual symptom, and loss of appetite is possible, but unusual. I think you are wise to get it checked out in case it isn’t MS, as sadly, MS does not make us immune to other things. If these symptoms are unprecedented in your eight-year history of MS, I think it’s best not to assume they are related. True, every relapse can be different - even in the same person - so just because it’s not similar to anything you’ve had before doesn’t mean it can’t be MS. But if it doesn’t feel familiar, it would be unwise to assume.

I get a lot of aches and pains, but not everywhere - even during a relapse. I find I get specific problem areas, and yes, walking can be affected, but I don’t tend to find everywhere hurts, all at once, nor that I lose my appetite. I do have an uncommon number of what seem to be stomach bugs these days - perhaps one or two a year, compared to about one in ten years before. So I’m guessing these are connected to MS, rather than being genuine viruses.

But other than that, I’ve not usually had appetite changes.

Have you started any new drugs recently, or checked the patient information leaflet of any drugs you were already on, to see whether these symptoms are listed as a side-effect? What does your MS nurse say, if you have one? Does she think this sounds like a relapse, or is she suspicious of other causes?

I don’t want to tell you it’s normal, because I’m honestly not sure, and I wouldn’t want to put you off having other investigations (if they are recommended), or indeed to tell your family it’s all fine, when I have no way of knowing that. It sounds like you have checked with the medics, which was sensible, but if you are at all concerned it may not be the MS, then please don’t just let it drop. You need answers one way or the other - someone (your neuro?) who will be able to confirm whether this is just a particularly unpleasant relapse, compared to any you’ve had before.

Also have you been ill with anything else (infections?) recently? An infection can cause a sudden dramatic increase in symptoms. Common culprits are respiratory infections (including colds), and water infections.

Tina

x

1 Like

hi stephanie

as tina says get checked out.

i have had a bad year so far. the first year was a novelty! years 2 - 5 were pretty good.

last year i felt fabulous!

this year i’ve felt f***ing rubbish but not long now until a new year begins so here’s hoping.

the biggest change this year is painful feet so will be laying off the high heels!

ask your ms nurse for help explaining it all to your family and even better if she can suggest something to make you feel better.

meanwhile have a hug from me ((((xx))))

carole x

Thankyou Tina and Carole. So you both feels like it’s not the typical Ms symptoms from ur knowledge and experience? All my bloods have some bk normal heart X-ray was normal ecg was normal the doctor doesn’t have much else to test me for.

Sending hugs to you both xxx

Hi again Stephanie,

The problem is, there’s not really any “normal” when it comes to MS. Symptoms depend on where the lesions form, and that’s pretty much pot luck. It’s very unlikely for any two people to share the exact same pattern of lesions, so they won’t have the exact same symptoms.

All I will say is in my experience, it’s unusual to have whole body pain, because (as far as I know) there’s no brain area that’s responsible for generalised pain. Different areas of the brain have responsibility for different functions and different parts of the body. That’s why, when lesions occur, symptoms tend to be selective, rather than universal - some things affected, others spared.

I’m certainly not qualified to tell you it is or isn’t MS, but if it’s out of line with anything you’ve had before, it never pays to assume.

Seems like your doc has tested for the most obvious suspects, so if all that came back clear, it seems to suggest there’s no immediate cause for alarm. Perhaps it really is the good old MS after all? I’d still be interested to hear what your MS nurse has to say, as she would have a lot more experience of things that do and don’t happen during relapses, so a lot more idea whether yours sounds odd or unusual in any way.

Tina

xx