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Undiagnosed

Hi I’m 38 and have existing under active thyroid that was only diagnosed 2 years ago after years of weight gain and fatigue I have also struggled with serve joint pain for the last 15 years but no explanation ever found. I have had issues with my hands first thing in the morning, unable to squeeze anything or even push myself out of bed and pins and needles in my feet 1st thing, all wear off quickly. Also occasional my slight goes blurry but always put this down to wearing glasses and working on a PC all day. 8 weeks ago I weighed approx. 12 stone 13 I currently weigh 9 stone 10, in the last 3 weeks I notice a numbness of the skin go numb spreading up from my toes on my left foot til it reached my knee. Last week I noticed that I couldn’t pull my toes back and had started to walk funny. Saw GP who sent me straight to A&E after speaking to neurologist. Waited 5 hrs to be told I couldn’t see neurologist or have scan, eventually given a CT scan by a consultant not a neurologist which was clear. Told I needed an MRI to which I need to wait a month. Now left to get on with it. Thought yesterday things might be returning to normal with my leg when I felt a burning sensation but instead I have even less movement. Does this sound like MS? And if it does will these symptoms subside as I have elderly frail parents I usually see ever weekend but as I cannot drive I cannot get to them. The 'NHS ’ system may deem waiting for a month to try to discover what is wrong with you as acceptable but for me it’s like torture. Sorry if I sound moany but feeling a wee bit sorry for myself … and if I am completely honest a little scared too. Many thanks

Hi Moog,

Unfortunately, your questions are among the commonest we see here, but ones nobody can really answer.

MS is a long and challenging diagnosis, and has many lookalikes, so nobody - not even an experienced neurologist - can tell just from a list of symptoms whether they are due to MS or not.

There are at least 100 other things it could be, and having another underlying condition complicates things further, because it’s possible it could be some common or uncommon complication of that.

MS, or any long-term condition that’s not immediately life threatening, is not a medical emergency, in NHS terms. “Serious” and “urgent” are two different things, and you can have something serious, without it necessarily being urgent.

Many people wait more than a month for an MRI - yours is quite soon, so I’m afraid you just have to try to be patient, and take comfort that the wait means nobody thinks you’re in immediate danger.

Unfortunately, nobody can tell when or if the symptoms will subside, either. Firstly, we don’t know if you have MS, and secondly, even if we did, there would still be no guarantees. The overwhelming majority of people with MS are diagnosed with the relapsing remitting kind, which means they have acute attacks, or episodes (relapses), from which they recover to a greater or lesser extent.

Recovery from attacks is often good, or even excellent - especially in the early stages of the disease. However there is a tendency, as time goes on, for some damage to be left behind, and if you are unlucky, this can be true, even of an early attack. So it is not possible to say with certainty how well anyone will recover. Most people do, to some extent, but they don’t always return to the same level of function they had before.

But all this is a bit premature, since it’s by no means clear you have MS - if you had something completely different, I’d have no idea what it meant for the prospects of recovery - whether they’d be better - or worse. I suppose it would depend what that “something else” was.

I’m sorry not to be more help, but what it is can only be answered by a neurologist, and sometimes only after a long time, and with difficulty. And even neurologists are not very good at predicting how well somebody will recover. It’s usually a case of: “wait and see”. A rule-of-thumb is that after a year, you’ve probably recovered as much as you’re ever going to, but it really can be as slow as that. Again, sorry this isn’t more positive - but there is a positive aspect, in the sense you should never assume something won’t get better, because it didn’t clear up in a few days or weeks. It can take literally months.

One more thing: weight loss is not a typical symptom of MS, unless there is some rather obvious explanation, such as somebody struggling to eat because of it (swallowing problems can occur). If you are eating absolutely normally, MS would not usually cause weight loss, in itself. So out of all you’ve said, that one thing does not fit with very well with MS. The rest might or might not be.

Tina

hi moog

are you taking any meds for your under active thyroid?

if so these could be causing your weight loss.

carole x