Does this sound like MS?

[Mascarponeandwine]

I had some mild symptoms around 12 years ago that lasted, on and off, for a year. They went away completely, 11 years nothing, then recently (a few months ago) came back stronger than before. They include:

Hands going numb at night, usually left but sometimes right, wake me up, goes away when shake hands for a couple of minutes

Random Patches of pins and needles on arm/leg/head/mouth lasting no longer than 3 seconds, and moving around constantly.

Twitches in random places come and go, can usually get rid by pressing the muscle hard for a few minutes. Had one numb toe that went away when I walked on it.

Occasional intention tremor in left hand - possibly related to cubital tunnel injury back in February.

Balance / dizziness - worse than 12 years ago, worse in morning, not so bad that people would notice but on/off travel sickness feeling and positional issues.

Clumsiness (hands) on occasion, and once had an internal vibration inside chest when dropping off to sleep.

Occasional day of brain fog.

I went to a consultant neuro 12 years ago, he did the physical tests and said nothing to worry about, it's all too short lived and transient. I don't have fatigue, no weakness and no vision issues. I've not missed work as it's not bad enough and I plough on through so far. Ditto travelling, which doesn't seem to make it any worse. I have a gp appointment coming up and wondered whether to ask for an MRI. At the very least I'd like to take something for the lightheaded nausea feeling. I'm not sure it's MS as I kind of agree that symptons all come and go like the wind.

Can anyone relate? I am bad at googling but haven't managed to find anyone worldwide who had brief shifting pins and needles who was eventually diagnosed with a neuro disorder. Everyone has lasting symptoms indicating damage to CNS.

If relevant, I'm now mid forties with well medicated hypothyroidism. I also think I'm a bit deaf in one ear, had an inner ear MRI a few years ago for tinnitus which was clear.

How did you get on at the doctors Marscaponeandwine?

I have had these symptoms and others you haven't mentioned and still have some of them sometimes.I had tests and scans of brain etc. They suggested vestibular migraine. However a year ago I was prescribed iron and B12 and its made a massive difference.Have only read your post so will read the others now.

I also think you should request B12 again as normal levels can vary. If you are the low side within the normal range this can mean you exhibit symptoms. It does help to ralk it is very scary.

talk....keep talking and get tests!

I had a lot of the symptoms you describe and it was my thyroid. I didn't ever feel completely well on thyroxine (T4) and needed some T3 as well. My symptoms are now pretty much resolved. Do you have your latest thyroid results and ranges (the figures in brackets)? I would also recommend having s look on the Thyroid UK website - they have a list of symptoms which you migh recognise many of.

I too have a lot of the symptoms you describe. Coincidentally I also have had hashimoto's for 20+years.

I have had a brain MRI and a spine MRI, but brain was done by GP and spine by my spine surgeon at the local orthopaedic centre in the next health authority.

My brain scan showed patches of white matter and GP has referred me to neurologist urgently. Just had a letter to say the urgent list is 35 weeks! I am in Wales so don't get to choose Consultant. My spine surgeon told me to ring for an appointment once I have had to spine MRi to see him again - they gave me end of March and have put me on the phone call list for an urgent appointment. everything is taking so long. I have not had a consultation about spine scan and GP can't access it on his computer.

I have MS; diagnosed 1989 following an MRI, (one of the first). You should request one. The problem with MS symptoms is that they vary so much between people. Not everyone will get every sympton, it is very random. Plus, many of the symptons, especially like you describe, can be found in other conditions. MRI is the way forward, it is not always totally 100% but should give some indication of any 'scarring' that has occurred in the brain. Make sure you mention the incidents 12 years ago. Finally, if it is MS it is not the end of the world, the condition can vary enormously, sounds like you are quite benign, as I am. Occassionally use a stick, thats all.

Hi, gp is next Tuesday, sorry I miscounted the weeks. I do have a blood test already booked for the end of next week too, which is handy as the gp can add any additional tests on to the request during my appointment and hopefully all bloods can be done in one go.

I sway between being positive it's ms and being pragmatic that the symptoms just don't add up. On the blog written about first symptoms by the local ms society, people either woke up with numbness of a limb/big section of the body that didn't go away, pins and needles that didn't go away, vision issues, or weakness (e.g. foot drop, hand limp). None of it rang any bells with me, I was actually quite shocked. Also, if these are relapses they are lasting a long time (12 years ago the hand numbness at night went on for over a year).

On the other hand, if it's thyroid or b12 related I don't understand why it would go away for so long.

I also feel worse in the morning (wobbly lightheaded and stiff) and tend to improve through the day, is that relevant?

I will hopefully get a quick referral through my employers private health insurance as long as the gp makes it sound like there is clinical evidence / need (insurance co have turned down previous letters for other things).

The neuro was so so sure that I had symptoms that did not have an underlying sinister cause and I had nothing to worry about

Just to add, the ms society bloggers talked a lot about 'sides', most people seemed to have a predominance for one or the other. My tingling patches don't have a side, it's just random patches. Even the numb hands on waking vary - one night it's left ulnar nerve, a week later it's right carpel tunnel, then nothing for weeks then suddenly both nerves in either hand will go. Cant imagine what it's like if the tingling pins don't go when you shake the limb, really feel for anyone who has that.

The only constant is my on-and-off deaf right ear (that improves slightly when I hold my nose and blow - it sort of pops/crackles and is better for a little while). And the lightheadedness that comes and goes.

It's good to get peace of mind. My gp has referred me to a neurologist with my symptoms but he was unsure as to what is going on and as I said before I have had back surgery and b12 deficiency so some of my neurological symptoms could be due to that. Keep us posted x

My last plasma TSH was 0.93mU/L last year. I don't think they've done any other types of thyroid tests for ages.

Thanks everyone for your thoughts, it seems to boil down to thyroid, b12/iron, fibro or ms (at least it's either neurology, endocrinology or rheumatology!)

Good luck, OP, be good to get to the bottom of it, I am sure you will get an answer either way. Try not to worry, whatever it turns out to be, that's the first step, once diagnosed you can have treatment and receive care by a team of experts in the condition. All the very best.

Thanks all. Yogagirl123 your doctor sounds great. Mine wouldn't refer me to a neuro, i had to go private. He said he "couldn't refer me because I had random itches"

Another question - the "inner ear MRI" I had 3-4 years ago for pulsatile tinnitus (that mysteriously disappeared) - would that have picked up lesions if there were any? The scan lasted about 35 minutes so I'm thinking it must have been a full brain scan, it definitely looked at the nerve of hearing and balance in great detail according to the subsequent letter from the consultant.

My previous b12 test result was 777.

Clairethewitch70 - 35 week wait is awful . With a routine referral you'd be waiting years!

PissedOffNeighbour - I have looked at the ThyroidUK site and can match off plenty of symptoms. Hopefully detailed blood tests will provide some answers.

Bubbington - I've read a little about benign ms, looks like it's usually vision / sensory symptoms with a long time between each relapse? It seems that the pins and needles linger for days / weeks though (my neuro's argument was that transient pins and needles lasting 3 seconds in patches and constantly changing location was not an ms symptom).

My biggest problem at the moment is the lightheadedness, followed by clumsiness (the latter of which I think looking back started on february and I didn't realise at the time). Can early relapses last 6 months to a year or longer?

Had long discussion with gp who I hadn't met before. He said doesn't sound like MS or motor neurone as symptoms not presenting in the pattern that would be expected for those. He basically said what the neuro said years ago, that these things happen and they don't know why but it should eventually go away like it did last time.

He's doing loads of blood tests including for autoimmune diseases and thyroid testing. He did the neuro tests on me and said my reflexes were slightly brisk but not abnormally so, nothing he wouldn't expect to see in an otherwise healthy person. That's worried me a bit! Does that mean much? I also have nystagmus but I've had that decades as had eye surgery as a child.

I have to go back in a month to discuss how I'm getting on. Offered me cbt - not really sure I feel balanced/stable enough to get there! Probably walk into the door frame on the way in!

I've discovered stugeron for motion sickness so am taking that off my own back (desperate to get through the day at work). Gp said there wasn't anything else he could prescribe for light headedness.

Told him I have private medical (which might help my case for a referral?).

So I guess I carry on for a month and see if it does indeed start to go away.

This might be a long road - what do you think?

How do you feel about it? I took my dh with me, more for moral support but it proved to be useful to give his insight and when he said I was like a different person I think both I, and the gp looked at him. However it is true and I am pleased I have been referred, particularly as the wait is so long. I think the fact you have private insurance is a massive bonus and hopefully if you are referred you will get peace of mind or the support you require if it turns out to be something neurological.

I'm not sure how I feel really. Mixture of relief to be actually taking some positive steps, comfort that the previous neuro couldn't have been more certain that I didn't have anything neurological, plus the fear of "what if". I'm really pleased they're doing blood tests for ANA autoimmune and thyroid though.

My main (ridiculous) worry is getting a diagnosis so that I can travel next summer (booked before all this started) and obtain insurance (virtually impossible with undiagnosed symptoms). First world problem I know, but worrying how these health issues start to seep into normal life.

Hmm, yes I'm not sure how that works if you're not diagnosed but have consulted with symptoms....

You need a brain scan. My H has MS and they did a scan and found lesions on his brain.

Hi Marscapone, Sorry to hear you're none the wiser... Just with regard to MS - my DH has it/has had it for over 25 years but his is very marginal... In old diagnosis terms it was called "benign MS" but they don't use that term any more - it is now covered in the more general MS definitions. But the point about "benign MS" was that it appears to develop very slowly and relapses are minor and infrequent with no lasting impacts. Dh's Dr basically said that if he'd been on MS medication for the last 25 odd years they'd think the medication was doing a great job -but the reality is he takes nothing and to date (fingers crossed) it hasn't progressed at all. He was diagnosed via lumbar puncture etc in the end which I know you've not had but it may be a similar scenario. I suppose the downside is there is no diagnosis so you're not plugged into the system so to speak but hopefully DH's experience may give some comfort that even if it is MS you may be in a similar boat..

myrtleWilson what are your husbands symptoms? I have read a bit about benign ms but the symptoms seem to be a mild sensory version of RR MS, similar pattern, usually vision related or whole areas affected by pins and needles/numbness that last days/weeks, which isn't what I experience. Very happy to be corrected though!

Update - went to gp again today (different one). Blood tests were all fine - apparently autoimmune diseases, b12 and thyroid issues all ruled out.
Can't have a neuro referral on the NHS as apparently the physical exam that the previous gp did was normal and reflexes were symmetrical. The slightly brisk reflexes weren't in the abnormal range.
So I'm hoping my employers private health insurance will cover a private referral - insurance company sometimes gets a bit funny if there's no clinical evidence so will see what happens.
Does this sound hopeful? Or is an MS diagnosis often this hidden?

I haven't read any responses so sorry for any duplication.
A lot of what you have described can be related to anxiety. It does sound like you have MS symptoms on your mind. Could it be a health anxiety that is contributing to your symptoms?

Mascaponeandwine how are you doing? I'm glad you have medical insurance as I have been told the wait is 30 weeks so I'm not likely to be seen until beginning of March .

Hi Meg gosh that is really awful 🙁 I'm sorry you have so much time to wait, it's torturous. How are you doing?

I've had my first neuro consult courtesy of private insurance - neuro went through my history (well the main symptoms anyway as there are so many of them). Neuro said symptoms weren't particularly typical of MS and the physical exam reflexes etc was normal, but I have some odd eye movements that are quite rare. So it's brain MRI next - neuro thinks it might show inflammation but doesn't think I need a spine MRI as yet. I have googled the odd eye movements as a symptom but can't find anyone with MS talking about this particular symptom. I suspect "inflammation" means lesions but not sure I want to know really!

Oh and these odd eye movements were also noted by the previous neuro 11 years ago!

So am still in limbo but am feeling happier because of the progress.