Could this be MS and what should I do next

New diagnosis and before diagnosis
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Hello everyone! I was looking for a bit of advice on what to do next really please. I was diagnosed with Fibromyalgia 2 years ago, which is when I started to experience symptoms. However, I was diagnosed without even being seen. I have since had lots of blood tests and urine tests done but nothing abnormal, however safe to say I don’t really fully believe the Fibromyalgia diagnosis. I am a 23 year old female and had glandular fever 6 years ago.

My long term symptoms include extreme fatigue, frequent urination and problems emptying bladder, pain, crawling skin sensations, burning scalp, itchy skin, unable to regulate body temp, brain fog, cold hands and feet, raynauds syndrome, stiff muscles, episodes where my ear goes bright red, hot to touch and bruns and is painful, convergence insuffiency in one eye, blurred version and sore eyes. These symptoms come and go but have ngot progressively worse over time. However, in the past couple of months I have started to experience numbness and tingling in hands, feet and arms, muscle cramps, my hand siezes into a claw shape, the feeling of something wet on the back of my leg when there is nothing there, more severe cold hands and feet and an episode where I was stood with my Dad taking a picture of the beach and next minute had fallen onto my knees, no idea what happened - didn’t trip or fall or faint or anything.

My GP seems reluctant to do any more tests and has never referred me, however yesterday I spoke to a private GP who mentioned only MS and anxiety as possible causes but said that she would be suprised if it was ms due to my numbness/tingling/claw hand only lasting a few minutes at a time (up to 20/30 minutes). She has sent me a private neurology referral. I am wondering if it could still be ms despite the numbness/tingling/claw hand only lasting up to around 20/30 minutes at a time? Or is it just anxiety. And what should my next steps be - follow up private referral or speak to NHS GP? Thank you so much for your help it is really appreciated.

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Hi,

Welcome to the forum.

I was a bit surprised when you said you’d been diagnosed with fibromyalgia without even being seen… surely the person who made that diagnosis had seen you? Who was that - and what was the basis?

You’re at quite an early stage in investigating what’s going on, from the sound of things. The problem is that MS symptoms can often be symptoms of other, common conditions - so it takes a bit of time to work these things out.

To rule MS in or out you’d need to see a neurologist and it would involve things like MRI scans. GPs decide when to refer but don’t actually diagnose MS.

So you could see a neurologist privately - but it may involve more than one appointment to get to the bottom of it. So if you do this, you might want to ask the private neurologist if he/she can put you on an NHS list any future visits.

Alternatively, you could perhaps see a different NHS GP. Tell that GP you’re worried about MS and perhaps mention your private GP visit. Ask if they’d be willing to refer you to an NHS neurologist.

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just wondering, who diagnosed your Fibromyalgia and who ordered the various tests and similarly I’m wondering why you ‘don’t believe the Fibromyalgia diagnosis?

I’m no medic but for what it’s worth my MS symptoms are nothing like yours (mine are problems moving my right leg, some loss of dexterity in my right hand, plus the very common symptoms of constipation and bladder urgency - many of us with MS have experienced embarrassing events wetting our pants and trousers)

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Ideally you would go through your GP, but you have explained the problems there. Given where you are, if you can afford it I would be inclined to proceed with the private neurologist referral and see where that takes you. It’s not ideal, but none of this is, is it?