To ask you what your early symptoms were? (MS)

[Hissinggoose]

Long and boring story short, I was diagnosed with ME/CFS about a decade ago. Last year I noticed a dramatic change in my fatigue levels, and had a bit of a relapse, resulting in time off work. Things didn’t improve brilliantly, but enough that I could carry on with life & get back to my job - I went to my GP in the summer with concerns about my symptoms worsening (increased fatigue, brain fog, clumsiness & migraines). My GP had blood tests done, which came back as very low vitamin D, and that was it - take vitamin D at high levels, and that’ll solve things.

Well, it hasn’t. If anything, things are worse now - I’ve been off work for several weeks now (though am desperate to get back because whilst still exhausted I’m bored stiff!) due to fatigue. My brain fog has turned into full-on aphasia some days which is distressing when I forget basic things, or can’t process basic questions from my fiancé like ‘what would you like for dinner?’, and I’m getting daily numbness & tingling in my legs & hands. WIBU to ask you what your early symptoms were, and if I should push for my GP to have this investigated instead of fobbing me off with low vitamin levels like last year (though I feel guilty having seen her quite regularly recently with the current time off, I always feel like I’m wasting their time)?

Push for referral to neurology and a brain and spine MRI. Does the numbness and tingling last long or have a pattern?

My first concrete symptoms were constant pins and needles in my hands and feet. I also had low level cognitive problems (forgetting things, not being able to find the right word, that sort of thing) however I'm not sure if that was MS related or because I had a lot of illness around that time.

My doctors first said it was down to my Crohn's or the meds, then anaemia, then they decided I was depressed, eventually after 18 months of repeated visits ruling out different things I got a neurology referral. The neurologist told me that I didn't have anything wrong with me and he'd do some tests to prove it... the MRI picked up lesions and showed that it was actually my first MS episode.

My second episode was l'hermitte's sign and my third was a worsening of the symptoms in my legs- tight muscles and burning sensation on top of the pins and needles.

Have you had your vitamin D levels retested?

@Mascarponeandwine usually lasts between 30 mins & a few hours at a time now - started out just a few mins at a time. More one side than the other, but it’s my dominant side that’s affected which makes it more noticeable I think!

Were your calcium and parathyroid levels checked?

@chrohnicallyearly the cognitive issues you noticed sound a lot like what I’ve noticed - my memory has always been excellent and now some days it’s like a sieve! You mention tight muscles on top of the pins & needles, does that feel like you need to stretch but just can’t no matter what you try? That’s how I feel a lot of the time, I’ve been putting it down to upping my activity levels after brief bed rest but now I’m not sure if it’s that or something else.

@Spottyowl I asked if I needed to be retested after 4 months on the supplements, and was told it was pointless because they would have raised the levels

@MrsMozartMkII unsure about calcium, but thyroid levels were apparently fine (Mum is borderline & an aunt had serious thyroid issues so that gets periodically checked just in case)

God I could have written this myself and everything has clicked.

Watching with a lot of interest.

Get your calcium levels checked.

The other one is parathyroid, not the thyroid - the parathyroid are 4 little glands that live near the thyroid and the control calcium. This is a useful website www.hyperparathyroiduk.com

The tight muscles are like when you purposely tense to make your muscles stand out. I can feel them with my hands, firmer than normal and slightly tender to the touch. Like you’ve done loads of exercise, except it’s usually after 30 minutes or so gentle walking for me!

A relatively new cognitive one for me is saying (or Typing) a wrong but related word. Eg telling DH I’ve put dinner in the fridge instead of the oven. Then as I hear myself say it I realise I’ve said it wrong and try to correct it. Even then I sometimes go wrong. Eg ‘no, not the dinner, the breakfast, I mean the oven, dinner is in the oven!’

I don't have MS myself but my aunt and another person I know do.

For both, pins and needles, memory problems, fatigue and dropping things were early symptoms.

I would definitely push for further investigations in your position. Even if they can't do anything about it, at least you will know what's going on.

I feel for you - MS is a horrible disease

I’m also following this as waiting. Symptoms just like mine.

Weakness on my right hand side. Not massive stroke like weakness, just difficulty gripping and movements feeling harder work. Significant fatigue. A weird electrical sensation down my neck and back when I look down.

I would definitely ask for a referral. Also if you are diagnosed please check out the Overcoming Multiple Sclerosis charity. Their approach has been life changing for me. I had MS for five years before I was diagnosed and I was steadily progressing. Since following their program which is basically healthy living (they aren't trying to sell you any products) I've not had a relapse despite not taking any meds and there are many others on their forums and the Facebook support group in the same position.

I’ve got an appointment booked with my GP in a couple of days, so I’ll approach it then. She’s been supportive before, and was very helpful with my previous diagnosis - maybe I caught her at a bad time last year when I first mentioned noticing some of these? Part of me wishes you’d all told me the first symptoms you all had were purple flowers sprouting from your ears or something

@MrsMozartMkII if there are blood tests done, I’ll be sure to ask about that.

@ChrohnicallyEarly yep, sounds familiar. That and phrases that in my head are normal, but come out like an alien such as ‘have you made the socks clean?’ when I meant had the laundry been done.

@squee123 noticed that. Was referred to a physio, who told me I needed to brace my elbow at night as I’m overextending a nerve by sleeping with my arms close to my chest. The only difference that has made is making sleeping very uncomfortable with the recommended towel-brace! I’ll add it to the symptoms as it hasn’t improved at all.

My first symptoms were numbness, pins and needles, stroke like symptoms on my right hand side
It was taken seriously when I suffered from optic neuritis and lost vision.
You do have to push for diagnosis.
Typically an MRI will diagnose
I didn't have a lumbar puncture thank god.
Women are more commonly diagnosed with RRMS there are a number of new drugs available.
X

With MS your symptoms often feel worse after a hot bath. Have you found your symptoms worsening with heat?

Not sure if it's the same for everyone but when I've had a relapse it hasn't only been for 30 mins a day for example, it would come on over a day or two and then it'd be there for as long as the relapse took to run it's course, with symptoms getting less severe, usually 6+ weeks.

You need to get your B12 levels checked. Pins and needles, brain fog, memory problems, cognative decline, fatigue, and more are all signs of a deficiency. Low B12 can cause nerve damage and permanent changes for life. I would certainly get that checked asap.

ToeDust yes, temporary worsenings are exacerbations or pseudorelapses, and can be caused by things like doing too much, overheating, being ill. There's no new damage or inflammation in the brain associated with them. It has to last more than 24 hours to be a true relapse (at least, that's what my ms nurse told me)

Optic neuritis. My right eye went all blurry, felt pressure in it. My GP was on the ball and sent me to a specialist immediately. They did a lot of tests and referred me to the MS clinic, who did a lot more tests including an MRI and lumbar puncture within a week.

With MS there's not one single test that shows it. They collate multiple tests and diagnose from there.

I had HSCT a couple of years ago so a lot of this is gone now but in the past I've had l'hemmites (if you bend your head forward then you get like a tingling sensation run down your arms to your fingertips), heat sensitivity, bone crushing fatigue (like a switch has been flipped), bowel problems, balance problems, hand shaking (when trying to focus on something like writing). Now I'm only left with a bit of balance issues but it's definitely better than it was. Stress can make things worse.

Delayed reply because for various reasons, I didn’t get to speak to my GP about the symptoms that were worrying me last month when I posted this - I did today, and I’ve been referred to an urgent TIA clinic for an appointment tomorrow My GP doesn’t think that’s what’s going on, and has stressed that she thinks I need to see a neurologist, but because of my age (I’m only 30) I’d be waiting at least 5-6 months for an appointment to come through & that’s too long with what’s been going on - this is apparently a known workaround in our area? Either way, I’m both panicking and glad I finally spoke to her about it, because it clearly is something serious enough to check.

@Hissinggoose did you get anywhere with a diagnosis? I'm dealing with a similar scenario.

My first symptom was optic neuritis but after diagnosis, I realised I had had lots of signs like pins and needles etc that I hadn't taken any notice of. Have any of you with symptoms but no diagnosis considered fibromyalgia? My brother has it, and a lot of his early symptoms were similar to mine.

My cousin has it. Her first symptom was when she was driving home one day she thought a passing motorist had flicked a cigarette butt through her open window. She actually stopped the car to check. It was a sudden, burning sensation at the top of her arm.
When it happened again, along with visual flickers she saw the GP and was diagnosed incredibly quickly as MS usually goes.