Handhold - possible MS?

[spottywelly]

Just looking for a bit of a handhold, if possible. I’ve had an unusual sensation in my left leg for a few days now - it’s like a rhythmic vibrating/buzzing deep inside my leg, not painful but quite unsettling. I’ve had the same thing before, but it’s only lasted an hour or two previously whereas this has been going on since the middle of last week.

I booked a GP appointment, who has referred me to neurology and said that they will want to rule out MS. I get private medical through work, so this is all happening on that, and should be quick, but in the meantime I am googling and scaring myself.

I had optic neuritis in my 20s (almost 20 years ago) and the possibility of MS was raised then, but my MRI was clear, and they said if anything was going to happen, it would probably be within a few years. I haven’t even thought about it recently as it’s been so long, but reading through symptom lists I’ve realised I do have a fair few of them, and have just put things down either to other health problems (I have RA), normal ageing, or just one of those things. Now I’m putting them all together I am quite worried.

I have usual sensations - mostly pins and needles but also a crawling/tickling on the skin, occasional shooting pains, patches of skin which feel tingly and then hurt when you touch them, burning feeling in the soles of my feet, random muscle twitches, tight muscles, double vision, bright flashes of light in my peripheral vision, tinnitus, general pains, memory and attention problems, trouble getting my mouth to say what my brain is thinking, dizzy spells and general tiredness. Most of these come and go quickly, in seconds/minutes/hours, but others last a little longer or are permanent (mostly memory/attention).

I know that the only person who can diagnose me is the neurologist, and I’m hopeful that once the bank holiday is over I’ll get in to see him quite quickly, but until I do, I feel like I’m spiralling. Do these sound like MS symptoms? Does it matter that most of them don’t last very long? I’m worried that by the time I see the doctor my leg thing will have cleared up, there’ll be nothing to see/find and I’ll be reassured but then it’ll happen again.

Has anyone got experience going private for the initial diagnosis period? My RA diagnosis was through the NHS and I was fobbed off and minimised for ages because my symptoms were sporadic. It took years for them to finally agree to do investigations so I think I’m a little scarred by that!

Apologies for the brain dump and thanks in advance to anyone who can talk me down 😊

@spottywelly I have quite a few of these too , definitely the buzzing thing- like you are stood on a battery. Neck pain and bad headaches in
My case plus the pins and needles and creeping nerve thing. I did see a neurologist though back in December who didn't order an MRI as said at 61 I didnt'present' in the usual way for someone with MS at 61-no reflex issues, no grip problems, no falls - a lot of long covid symptoms are very similar and can come on months after covid or vaccines- obviously the fact you've had the optic thing kind of is in the mix - but it may be something else- will be thinking of you xx

I'm waiting for my NHS Neurology referral to come through so know the feeling of symptom spotting and fretting.

I have been to the drs a few times for the last few years with numbness and pins and needles/ tingling, brain fog etc but they have just fobbed me off and only recently has the GP put a referral in. 20+ week wait currently. Im planning to pay for my MRI to speed things along, but have been recommended to wait it out for my initial appointment before I go down the private route as I don't have an unlimited pot so will need to be put back on the NHS list if MRI shows anything.

I think the problem is once MS is on your radar all the symptoms seem to fit, even if they could be something else. It's really just a waiting game really. Hopefully you get seen soon.

I have this @spottywelly so can empathize. Also had an MRI to rule out MS. You have RA and Sjogrens syndrome can present as a secondary autoimmune to RA or yes, it could be long Covid or vax/boosters. I have Sjogrens, it presents in s similar way to lupus, fibro and MS. and it went crazy post Covid/booster. Consider small fiber neuropathy but the NHS won't biopsy for that unless maybe you insist. Good luck op.

Firstly, try not to panic. It sounds like you’ve had these symptoms a long time and that overall you’re pretty well. I have had MS for over 20 years and have had symptoms on and off the whole time, but was only diagnosed in 2016. Even if it is MS, it isn’t necessarily the life sentence it appears. I ran the London marathon 2 weeks ago. There are different types of MS and there are lots of medications now. Try not to panic until you’ve seen the neurologist. I wasn’t diagnosed in a normal way - I had had an mri many years ago for something else and unbeknown to me it had been flagged as there were lesions. I then had what I now know was a relapse in 2016 which put me in hospital and had an MRI and was totally floored by the diagnosis, which was immediate. I obviously thought that was the end of life as I knew it, but it really isn’t. I hope you get some answers and positive news x

@Spotnessmonster yes- I was told same -which is why I've held off - I did see the neuro privately - but it was her who said about the MRI too.

The thing is OP- the osteopath also told me you can virtually get all the same symptoms with arthritis/ nerve compression in neck or spine and fibromyalgia too- many of the same symptoms- can be lots of other things

@CherryRipe1 I would like testing for this too as one of my biggies is the dry eyes thing-very very sore eyes constantly- came on straight after covid vax in my case - quite a lot of the auto immunes present in a similar way OP.

I've also had MS for 20 years. It does sound like your symptoms could be MS but may also be other diseases as well. Your life IS NOT over. Its tough some days but mostly I have lived my life as I planned. Don't panic. Its not a terminal diagnosis like some cancers. You can do this. Even if it is MS, you will get through it. Look up Ladies with Lesions on Facebook. It's a great support group for women with MS or who are going through a diagnosis.

Hi Op, did your GP order blood tests? These are all signs of diabetes.

*most

Thank you for your words of support. I’m hoping it’s something minor and easily fixed, moreso that it being ‘just normal’ for me. The last time I had something which was ‘just normal’ it turned out to actually arthritis, so finding nothing actually feels scarier. I don’t know if that makes sense?

That said, I’ve been very lucky with my RA (so far - cross fingers!) and have really mild symptoms most of the time. I am generally a pretty well person, which is the thing which makes me doubt that it is something like MS, even though the symptoms fit.

@Youdrivememad I haven’t had tests specifically for this, but I have regular blood tests for my RA so have had full blood count and inflammatory markers done recently which showed nothing out of the ordinary for me. Have also been tested for diabetes, vitamin deficiencies and thyroid issues within the last couple of years but not so recently.

Hi OP, I was diagnosed with MS at 25, now at 51 I've lived and worked in 4 different countries, mostly full time. Have children too. It's not the end of the world.

Coupla warnings though: for me the diagnosis was worse than the first attack as they sent me home 30 mins after the lumbar puncture- needed the bed apparently- and left me with a week of untreatable debilitating headache. Insist on several hours' lying down after lumbar puncture.

And it's a bit shit that you can't move to countries where insurers can discriminate against pre-existing conditions. Unless you're rich of course.

I guess you have to learn to live with insecurity. Not great but perhaps in a way educational? Best of luck.

Thank you @ThreeLocusts

I’m seeing a lot of similar stories of people living their lives regardless which does give me hope if it does turn out to be MS.

I’m feeling pretty rough today, but also managed to book my neurologist appointment and it’s only a couple of weeks away so feeling a bit better because of that.

Just a quick update - I saw the neurologist yesterday.

He said it could just be perimenopause/general ageing, and he did a neurological examination which he said was fine, but he’s referred me for a brain and spine MRI to rule out MS/other inflammation as he wasn’t totally happy to ignore it given my history of optic neuritis and other inflammatory conditions.

I’m feeling much happier about it now - I’m glad he wasn’t overly worried and that he couldn’t see anything obviously wrong on the exam, but I’m also happy that I’ll be having the MRI so I’m not left wondering.

That's a good update. Sounds like they were reassuring but not dismissive.

That's good, hope all goes well. I've had an MRI to rule out MS. It was a weird experience and nowhere near as bad as I was expecting, not claustrophobic.

Thank you both. Reassuring but not dismissive is exactly it - the best way it could have gone, I think.

Thought I would pop back to update after my follow up appointment. My scan came back as totally clear - they found no evidence of anything which could be causing my issues and no evidence of MS.

This is obviously good news, though I am still having symptoms, so now I’m trying to figure out my next steps. The consultant offered to refer me on to rheumatology, but I’m already seen by them on the NHS so I might just see if I can bring my next appointment forward a little and ask them about it.

I am not a doctor and this may not be remotely relevant to you op but I started taking B vitamins and magnesium and the wierd sensations in my legs and the tinnitus disappeared. Hope you can get to the bottom of it all.

I'm very much wondering if you have neurological long covid- this buzzing in legs and pins and needles stuff is so so common- go on the long covid support forums and it crops up over and over again- along with dizziness, muscle pains , brain fog , tachycardia and general fatigue

I was also going to suggest B12 and/or folate deficiency, there's a Vitamin B12 Wake Up Facebook group full of people with similar symptoms.

B12 deficiency or B6 overload? High B6 is horrible, I was convinced I had MS or similar.

Thank you for your suggestions. I’m pretty sure it’s not long covid as my symptoms pre-date the time I had it, but I have a history of deficiencies so that could be something to do with it. I’m regularly anaemic and have had vit D and folate deficiencies in the past but they were all ok last time they were checked. I’ll see if I can get someone to check my blood!

Hi OP. Did you ever get to the bottom of this please? I have exactly what you described but also a clear MRI. Vision loss when I was a teenager. But everything looked clear. Any ideas? Thank you!

Hi. That is a long list of symptoms that could be MS but could be something else too. Try not to stress as stress exacerbates symptoms of autoimmune conditions (I'm sure you know this). I also know it's easy for me to say this but I've been in your shoes & now support others with such conditions. Try some meditation - it helps. If your neuro is trying to rule out MS, they should do a lumbar puncture as well as the MRI. Ask for it if needs be. If you have tingling in your hands & feet, ask for a nerve conduction test. If you want a chat, let me know.