I don't know what's wrong with me

New diagnosis and before diagnosis
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Hi,

I haven’t had a diagnosis but after looking around I’m concerned MS may be a possibility. I had quite a bad do last night which was a bit odd and scary. I know you can’t diagnose me, but I’m wondering if my symptoms/chronology sound anythign like MS based off real world exeprience?

I’ll try and go through my symptoms in a chronological sort of order.

For a few years a spot on my head has been going intermittently numb/like hot water was being poured on it. I thought it might have been shingles or something. I’ve had this move to my toes but it always hung around on a particular spot on my head.

I started getting a really weird post reactive malaise when I played football. It doesn’t happen all the time, but is getting more frequent. I can be full of beans then by half time I could close my eyes and sleep on the side-line. It’s really odd as I am not physically tired- it’s not over exertion.

I’ve been suffering fairly bad brain fog and had some visual issues. When I’m stressed my vision goes really blurry. I’ve also noticed at times my vision is sort of vibrating when I am talking to someone one on one. (Spec savers sent me as a medical emergency to an NHS eye clinic due to there being very high intraocular pressure- but when they tested me everything was normal.*)Again, not all the time, but seems to more frequent. I also get sporadic spells of dizziness, sitting at the laptop I can suddenly feel like I’m falling forwards. I did get sent for a CT of the brain and it was all clear.

Those symptoms have been on-going for a few years.

About 5 months ago a spot on my right quadricep went numb. No direct injury. Really odd but I could pinch it and there’d be nothing there. It was also really itchy around bedtime. This has since calmed right down, no numbness or itching.

Just over the past few weeks, after a month or two with no quad numbness my index finger on the left hand has gone numb. Last night my left hand when completely spastic- it was a horrible feeling. It was crunched up and distorted and I couldn’t straighten it out. It scared me. It didn’t feel like it was just because I’d slept on it- I’ve done that before and had a numb hand/pins and needles.

My left index finger is still numb right at the tip as I type this.

I don’t know what’s going on, but like I say, last night scared me. Respectfully I just wanted to consult with people that may be able to say ‘nah, that sounds nothing like MS’ or ‘Yeah, could be’… I don’t know what to do, I’ve been in and out of the Drs and seem to be getting nowhere.

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For me, you’re not obviously in the ‘nah, nothing like it’ category. Which isn’t to say I think you might have MS because I have no idea, obviously, just that my purely personal experience of having it doesn’t say to me that you absolutely definitely don’t. There are many conditions that the medics methodically rule out when weird neurological stuff starts happening. The secret is to keep an open mind and not jump to conclusions ahead of the evidence.

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Thanks Alison, I didn’t word that last bit very well. My head’s been up arse today. Whilst I have been to the Dr a few times regarding the numbness etc it’s never really scared me until last night. My hand was so contorted. Something is really not right. I just want to know what’s going on with my body.

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I didn’t word my reply well if it reads as if I think you’re jumping to conclusions- I don’t: you sound very measured and sensible about it all. . My point was the general one that, in general, jumping to conclusions isn’t a great plan for anyone and is a temptation best avoided, but you already know that! :grinning:

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Is there a weakness on one particular side of the body, as that may be an indication of MS.
it definitely sounds neurological, but until it is properly diagnosed via an MRI scan I would look closely at your diet and reduce saturated fats as much as possible. It will not do any harm anyway and will definitely help the demylineation of the spinal cord if it does turn out to be MS. My mother had MS as well as me and she lived until she was 96!

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Hi, thanks for all your replies, most kind and really useful. No, I don’t really have weakness down one side. I’ve had numbness on the left side of head- which I thought was shingles but had no shingles rash or other symptoms. Then my right quad went numb and it’d itch like mad at night. That subsided then my left hand kicked off. I get blurred/shakey vision intermittently and have terrible post exercise malaise and dizzy spells- been going on years but it seems to be getting worse now and more frequent.

I’ve been to the Doctors today and was really direct, told her my symptoms and said I was concerned with MS.

She was a bit dismissive ‘Have you been Googling’ sort of thing. But in the absence of other explanations I’d like to know what’s causing these symptoms.

She said the fact my CT had come back normal along with my bloods is reassuring. However something isn’t right. There’s a two year wait for a referral to neurology. Fortunately there’s a service were she can send over my symptoms and get an opinion as to whether it could be MS and would be worth booking an MRI to get the ball rolling. Said it’ll only take a few days for this which is positive.