Getting weaker by the day / strange symptoms

[Tavelo]

Here for traffic as I'm so worried.
For a few weeks I've been more tired than usual, sleeping earlier and didn't think too much of it, but for the past week I've developed some much more worrying symptoms.
I have widespread muscle weakness, on both sides of body, it feels harder to do anything and objects feel heavier than I know they are. I did have a few dull headaches too but they don't seem to be happening now, although the weakness is getting worse. I also tend to wake in the night and have had night sweats in addition to this and problems with feeling too warm at night.

I have also suddenly had blurry vision when reading small things, so I went to the optician as I was worried it could be MS, the optician said everything healthwise with the eyes was OK, I'm long sighted and he said it's probably not related to the other symptoms.

I would say it's unlikely to be long covid as I had coronavirus over a year ago and it was a normal symptomatic case with no problems afterwards, I haven't had recent signs of any infection.

Temperature is normal, heart rate and blood pressure normal, blood sugars normal. Most recent blood test was a couple of months ago which showed nothing glaringly wrong thyroid wise etc. I'm so concerned as to what it could be, I've never felt like this in my life! I have called GP who has arranged another blood test for calcium and something else I can't remember. Does anyone have experience with such symptoms or any ideas? I'm 29 and female.

@Funsize123 Hi there and thanks for your response. I'm aware that this illness can be vastly different for each person and at the moment my main concern is the current decline I am on, just hoping it at least plateaus soon. Looking back I believe that on and off symptoms ive had over the years which were put down to trapped nerves may have actually been this all along. It might be good to talk to others with some experience so thank you for the offer.

You sound like you're expecting the worst, but it sounds very much to me like vitamin/iron deficiency, having been diagnosed with similar quite recently (last 12 months). It started as being a bit tired, then exhaustion, then pins & needles, then just absolute brain fog and wobbly co-ordination & balance. It was like being really drunk without the fun bit. My MRI (which took six months to wait for, after various blood tests & ultrasounds) showed liver problems too, which meant no matter how well I treated my body, it was an uphill task for it to recover.

What have your blood tests shown?

Oh my lovely. I was diagnosed with RRMS in November, and it felt like the end of the world. Suffice to say, it really wasn't. Hang in there, there's lots they can do these days.

I had very similar symptoms, and also suspected MS. After testing (head and spine MRI, bloods, lumbar puncture, nerve conductivity study) I was diagnosed with chronic inflammatory demyelinating polyneuropathy. It's the chronic equivalent of gullain-barre syndrome. Have a look and see if you recognise any of the symptoms. You're welcome to DM me if you want to ask anything about the testing process, treatment or my experience.

Has the GP checked B12, iron and vitamin D? Taking supplements doesn't mean they're being absorbed.

It's good they're checking for MS. But their are other possibilities like Chronic Fatigue and Pots. I was in the same place 3 years ago with all those symptoms, getting rapidly worse. Three different GPs thought it was MS. They never got to the bottom of it, MRI was clear, though my GP said only a lumbar puncture is definative and lessons can take years to show if it's the more gradual type. Symptoms mostly disappeared 🤷. I get periods of having them again, but nothing so far as bad as that first time. Between my illnesses and kids medical needs and SEN I've never got around to chasing it up. I know it gets worse when I'm rundown and tired.

I have TM (Transverse Myelitis) which was diagnosed after I started having symptoms like yours. It's similar to MS.

My sister has pernicious anaemia and gets similar symptoms when her jab is due. She lacks the enzyme enabling B12 to be absorbed so taking supplements doesn't help.

Try something like BetterYou's B12 or Vegan sprays or Solgar's Methylcobalamin nuggets that you spray/melt in the mouth.

I hope it's not serious.

Have you used nitrous oxide (laughing gas) - medically or as a recreational drug. This can deplete your levels of B12 to the extent that you get symptoms of this type.

Hey, I also have MS. My advice would be to ask (as in insist) to be referred to a neurologist who specialises in MS, preferably at a London hospitall or other big MS specialist centre.

I had my first definitive relapse in October 2019 (I suddenly went blind in one eye , it was utterly terrifying, so I have some insight into what you’re going through). It was the hardest time of my life, but I pushed very hard to see a recommended London MS neurologist ( I don’t live in or near London but it’s been worth the considerable travel hassle) and had already been diagnosed and started a high level DMT by the time an appt to see the MS neuro from my local health care Trust landed on my door mat.

Also, read up on . www.doihavecidp.com/en/cidp-symptoms

Things you’ve mentioned reminded me of a lady I see when I go for my infusions who has this. Not to scare you and do be wary of Dr Google, BUT listen to your own gut instincts and be a bug up the butt of everyone until you have been fully and properly investigated, which will mean brain AND spine mri (not just head and neck which I was fobbed off with initially and meant I then had to have another mri, just further delaying things, AND a lumbar puncture - which is honestly not as horrific as it sounds).

Get as much rest and help to see a decent specialist as you can. ShiftMS is a good resource if it does turn out to be that. You’re not alone and you can and will get through this.

Just to add, vitamin deficiencies can have massive effects and taking a multi vit and the odd vitamin D wouldn’t necessarily prevent this. If you’ve not yet had a full vitamin screening this needs to happpen asap. Sorry if I’ve missed this somewhere, I’m knackered! But had to add my twopence worth.

@mumoflittlemice Hi and thanks for your advice. I'm open to it being something less serious like a deficiency but thinking about patterns of illness I've had in the past I'm really thinking it is MS. When you say you pushed to see a specialist, was that privately or did you ask your NHS GP?

Hey, it’s all been NHS from start to now. It was my GP that recommended we go straight for a London centre. She was and is absolutely brilliant. It’s made all the difference. Remember you have the right to be treated in any NHS facility of your choice. If you’re not used to advocating for yourself, nows the time to get good at it!

Seriously wishing you the very best.

Hey! Hope you’re well. Did you ever get answers x

@Tavelo how are you doing now?

@SB1990 are you experiencing something similar? I am although my symptoms came on 7 months ago and just keep on progressing so really worried. Would be nice to connect with someone going through something similar.