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Julie

Hi everyone,

Needing a little help and support as I’m lost and confused about what is actually wrong with me.

I was diagnosed with MS 5 years ago due to numbness in my right cheek and pins and needles in my left hand. I was messed around by several neuros and was finally referred to a consultant up in London. I first saw him 3 years ago and he told me that he wouldn’t have diagnosed me with MS more a mild sensory disorder. I was obviously elated and all went well for the next year but when I saw one of his team the following year I was told I definitely did have MS! I am on 200mg of Pregablin which helps with the tingling and have no longer any numbness in my face. In January this year I had a bad flu and could barely get out of bed. Since then my legs and arms are heavy and ache. I have very little energy. I contacted the doctor and MS nurse who thought I’d had some sort of relapse. When I saw my neuro in June he was adamant that it wasn’t a relapse and low mood was causing my symptoms. He organised another brain MRI and when I received his letter he said “as expected with demyelination there were 2 new lesions” A low rate but what does this mean! I am struggling with my mood but a lot of it is to do with the uncertainty of what is wrong as something has to be causing this chronic pain.

I saw my GP yesterday and I have been referred to the pain clinic and have been prescribed Mirtazapine for pain/anxiety.

Any advice or personal experience would help me greatly.

Julie

Oh Julie, I do feel for you - it’s not unreasonable to know whether you have been diagnosed or not!

Even if the answer’s “no”, it would be nice if they would unambiguously tell you that, as you’d still be left with more questions than answers (like: “What the heck is it then?”), but at least you’d be clear about your diagnostic status.

I’ve been diagnosed over five years, and I am having trouble understanding the conflicting answers you were getting.

Your initial “diagnosis” does sound as if it may have been a bit premature, as they usually need proof of more than one attack for a confirmed diagnosis. It is not common to be diagnosed after only one incident - and that quite mild. Usually it’s a case of playing the waiting game unless or until anything else happens, which enables a firm diagnosis to be made.

But here’s the confusing part: you’ve received a letter indicating that new lesions were to be expected! Usually, you would not “expect” the patient to have new lesions unless it’s known and accepted they have a demyelinating disease - of which the commonest is MS.

So I do not understand why the new lesions are being treated as in line with expectations, if there’s no agreement you have MS in the first place.

What does your GP have to say about all this - other than referring you to the pain clinic? They are the person who should be coordinating your specialist care (from the neuros), and resolving any contradictions or unanswered questions, especially anything as basic as: “What has this patient been diagnosed with?”

It’s not irrelevant, because although it’s incurable, there might be important implications for you personally, such as being able to claim if you have a critical illness policy, and being eligible for drugs that might help to slow it down.

Now I personally do not think the latter are universally appropriate, as the benefit you get depends how active your disease is. Until recently, you had to have at least two attacks in any two years to qualify, but I think rules on that are less stringent now. But regardless whether these drugs do or don’t turn out to be the best path for you, it’s important to know what you are dealing with, so you have the option to consider them. Considering does not mean you have to say yes, but without a diagnosis, you’re being deprived of even your chance to consider.

Personally, I would pursue things with your GP, initially, and ask: “Look, what does this mean, that new lesions were ‘expected’? What is he saying I’ve got?”

You should be able to get a clear answer about whether you are diagnosed with MS, and, if so, why you haven’t had a discussion about treatment options, access to an MS nurse, and all the other hoopla that usually goes with it - though with hindsight, I didn’t get those either - I did get a firm diagnosis, but was left to research treatment options by myself, and report back what I’d decided. What I didn’t know back then was somebody was supposed to have talked me through the options. It seems everyone was under the impression somebody else had already done it, so nobody gave me the talk!

I’m not moaning, because luckily, I was OK researching by myself. But I only realised a long time afterwards that’s probably not quite how it’s meant to work - so mistakes and oversights do happen.

Tina

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Totally agree with Tina on this. If you do have MS, given your two new lesions you have evidence of progression. Pain clinics are all well and good but that’s just treating the symptoms not the disease.