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.

I don't know much about MS and I'm not sure anyone on MN can really help you with this. Are you quite preoccupied with your health? Googling symptoms tends not to be helpful (although understandable and we all do it!). I think only way to know is to talk to your GP as you suggest.

Hi, yes you're probably right with me having bouts of health anxiety. My gp didn't know what to make of it a decade ago, I only got a neuro referral through work private health insurance. I suppose I'm just after a straw poll of people's experiences of neuro diseases - the neuro I saw said I had no more chance of developing MS than anyone else in the general population. But the symptoms, although really really similar in nature, were worse this time around, and though I feel I'm now improving, what if they return even worse again 🙁

I can't really help either but I also have on and off bouts of pins and needles. They last for a few days at a time. Have had three big bouts of this over four years, not sure if I need to see anyone as no other symptoms (although I am fatigued and occasionally fogged of brain).

Not helpful really... sorry x

mascarpone I have all those symptoms and more besides It is all down to fibromyalgia although I was tested for MS and do in fact have high signal areas in my brain on MRI scan but neurologist thought nothing to suggest MS, just said to treat symptoms so I take a low dose of Gabapentin to keep tinglings , etc at bay. I dont really get much pain with my fibro, mainly fatigue and neuro symptoms. I also have inner ear and balance problems and slight hearing loss in one ear. This was put down to ageing, but it started when i was 35, i am now 47

The hand thing sounds very much like my carpal tunnel, I am having an operation on right hand next week for this.

Have you been back to your GP about it?

Am going to gp next week, had to wait a month for an appointment. I figured perhaps it wasn't urgent given that it's been 12 years.

Could I have fibro even without fatigue?

The thing with MS is, I believe, that symptoms localise in specific areas, or on one side. I'm not sure mine have really. I would be happy with medicating the symptoms. I don't even feel like I need a label, just to know that I've done what I can and I don't need DMDs would be enough.

A friend of a friend who does have MS pointed me in the direction of her local support group, as they'd put together s thread of "first symptom". I have to say I didn't identify with any of the 50+ postings, but maybe I'm talking myself out of it now

It helps just to have people to talk to

I have these symptoms and have b12 and foliate deficiency. The symptoms of b12 deficiency do overlap with Ms and I am seeing my doctor next week as I have been getting worse symptoms and I must admit I have worried it may be something in addition to the b12. I have terrible, all consuming fatigue and a
lot of my symptoms are on my left side, including eye and face pain. I do wonder if I might have fibromyalgia or something. To complicate things I have a back problem, which I have had surgery on and get a lot of numbness and tingling caused by this. However I also get tingling in my tongue, arm and trunk as well as muscle spasms where my arm and leg sometimes twitch on their own. I hope your appointmentors well and ask to be tested for b12 and foliate deficiency.

MegGriffin I was tested for B12 years ago and it was normal. My iron reserves sometimes get a bit low. I have started on magnesium and potassium high dose supplements and the tingling is a little less (twitching the same though)

I did used to have sciatica pain but that resolved ages ago (so it seemed)

Ah that's good that you know about it. I feel as though I should tell everyone as I was so Ill before I was diagnosed and thought I was going mad. My level was 67 and the range is 190-900 . I was told it can slowly drop over time so can sneak up on you and that they don't check b12 as standard.

See your GP for advice/referral. Did you have MRI of head and spine last time you saw Neurologist? I have MS, it can be a lengthy process to get a MS diagnosis, My MS diagnosis was confirmed by MRI. The symptoms you describe are similar to MS symptoms, but also for many other conditions. You don't mention any visual symptoms, so that is good. Good luck op, try not to worry.

Yogagirl123 I did think a couple of months ago that when I got really hot and exhausted, that my vision in the middle of one eye was fleetingly blurry, so I went straight to my ophthalmologist who is a specialist. She tested me thoroughly and said my optic nerves looked exceedingly normal and I had no eye issues that required referral, although my prescription had changed which was apparently a bit unusual and could mean diabetes (subsequently ruled out). Never had blurriness again... not sure if that helps or not

No MRI last time as was pg so they avoided it as thought it not absolutely necessary

Neuro said 12 years ago that he believed it would gradually get better. He was right - for 12 years!

Heat can make MS symptoms worse. Good news that your optic nerves are ok. My optic disc has paled due to previous inflammatory attack, but my vision is fine, thankfully. MS is often difficult to diagnose, As with the type if MS I have RRMS, a relapse can occur and then improve before you seek medical advice etc. In 2012, I experienced a very serious relapse, I was undiagnosed at this time, Neurologist said it was Transverse Myelitis, but he also said he thought it was MS, as lesions were found on my brain and two areas of inflammation in my spinal cord. When I had another big relapse in 2014, MRI found a further lesion on my brain that was the perfect spot to be causing the new set of symptoms, and MS was confirmed. I still found it difficult to cope with even though it wasn't unexpected and I suppose you could say I had two years to get used to the news. Having MS has changed my life greatly, but as with any thing in life a lot is how you deal with it etc. I always try to focus on what I can do etc. Good luck OP, I hope it doesn't turn out to be MS, but see your GP but to be sure, as the sooner a diagnosis is made treatment can begin. I am on my second DMD, I see my Neurologist again later this month for the results of my annual MRI, so keeping my fingerscrossed that no further activity is found.

Would you be able to describe a relapse? Can you still go to work etc? My two episodes have been workable through but seem to take up to a year to recover. It's like feeling travel sick woozy and clumsy but able to conceal it from others. I've no idea if that could be called a relapse or not.

Wish there was a blood test, limboland is mentally draining. How has your life changed?

Every relapse is different, my first relapse, made my stomach completely numb, pins and needles in my legs, numb fingertips, walking felt like I was walking on a spongy surface. I did still go to work, I was working part time, office job, I was put onto strong course of steroids, in fact when I went to collect the prescription, wearing my uniform, I was immediately ushered into a little room to be asked why I had been prescribed the medication, clearly they thought a major error had occurred! My second big relapse affected my vision, really badly, started suddenly, I could'nt focus on anything, everything was moving, totally debilitating. Strangely with me, if I am going to relapse it always seems to happen as the same time of the year. I had a very mild relapse a few months ago, that was also visual and everything I looked at for a few days looked like it was rippled around the edge. Decided against steroids as they made me extremely hyper.

The areas that MS affects my life is the fatigue, I get very tired, and have to build rest periods into my day. Memory, and cognitive function has been impaired, trying to spell etc can be really difficult, the clothes I wear, I avoid anything with buttons or zips, as the ends of my fingers are very numb, but also feel painful, sounds strange, but that's how it is. Weakness of my muscles, unable to walk any real distance, in fact I frequently stop, my balance is shocking, so flat shoes and my right leg will often shoot up without any warning. Giddiness. I left my job as I was finding it harder to concentrate and my job required a high level of accuracy. You learn to make adjustments to make your life easier, it's not all doom and gloom, I bet you wished you hadn't asked!

Positives are, yes they are some! DH does all the cooking, I go to a limited mobility yoga group, which is fab and I have met lots of lovely people with MS. The care I have received from my Neurologist and MS nurse specialist, has been brilliant I honestly cannot fault them. Because I can't do late nights, all those awful social things you don't want to go to, because your tired you have an ideal excuse and eventually people stop inviting you, hooray!

Yep no blood test for MS, usually dx through MRI, but you will probably find blood test will be suggested to rule out other conditions.

Thank you so much for describing relapses, it adds so much context. It's actually what I've been expecting to happen to me in the last 12 years!

I can understand why my neuro said definitely not consistent with MS. My tingling patches remind me of the big dome at the end of The Crystal Maze game, (buttons all over the inside of the dome light up randomly one by one, and contestants have to touch them all and keep up). It's like that but slower.

For example, lying in bed this morning I had a 3 second tingling buzz on my left knee. Half an hour later a 3 second tingle on my right thigh. A few hours later a 3 second pins and needles patch under my left armpit (that's a recurring location every few days). Probably get nothing for the rest of the day now (except the ongoing lightheartedness when I walk). Oh I did get some twitching / fasciculations at the side of my mouth the other day, managed to make that stop by pressing on the area for a minute and it's not recurred.

The deafness comes and goes as well, and perhaps that's not connected as I believe it's quite rare as an ms symptom. It was definitely worse after I went swimming and went underwater.

I reckon I definitely need a brain MRI to know for certain. I do have some other very odd symptoms that no one can explain, like one day 3 years ago I woke up and my entire left eyelid was puffed up and closed (not sore, no red, just huge!). It gradually went down over the course of the day but is still slightly more closed now. It's def a tissues issue I think, not a muscle one as I can move it fine. Maybe I should be considering endocrine or rheumatoid issues as well. My poor gp - good job i booked a double appointment!

Forgot to add the brain crackling (think rice crispies in front of head) that comes and goes, and positional issues (keep bumping arm on door frames and sides of tables). Had a brief lip tremor once too, that was really weird but short lived (5 mins or so)

Good luck with your appt. I have random things happen all the time, tingling, pain, sometimes symptoms only last 24 hours etc. Forgot to say also frequent uti. I had googled my symptoms before I saw the doctor I was pretty sure it was MS. Doctor was great said he didn't know what it could be, but that I needed to see a Neurologist urgently.

Keeping my fingers crossed for you, if you need to ask anything else just let me know.

Thank you so much, I hope the dmds keep you relapse free for a very long time.

From my own experience of having hypothyroid and reading thyroid forums your symptoms of internal shivering, numbness, brain fog, clumsiness and dizziness are fairly typical of the type thing that people with hypothyroidism have too, OP.

@ClumsyCow I agree sounds more like fibro...DH has MS days when leg would go numb and had couple of bouts of optic neuritis.
See your GP. .. when DH was diagnosed we thought it was brain cancer of sorts so MS was a relief although not great!

I have considered that it might be thyroid, I have been hypothyroid for 23 years but TSH (whatever that is) falls in the nhs normal range. Maybe I need more detailed studies. I have developed a nodule in the past 5 or so years that endocrinology didn't manage to needle test as missed the cells or something, but they said there were no suspicious features on ultrasound anyway so they just discharged me.

The neuro seemed to think it was key that I could get rid of any tingly numbness by shaking arm / walking. He also said it was key that the majority of my weirdness happened at night which was situation specific (and ms damage is apparently not situation specific and takes time to heal - well longer than 3 seconds)

Ive heard that the NHS "normal" is way way lower than other countries, it may be that you would need your thyroid upped to a higher level to totally get rid of all the symptoms.

I did get one episode when I woke up and my right leg was completely numb, now that would have been about 20 years ago, before anything else weird happened. I got out of bed and stomped the leg on the floor and the feeling came back completely in maybe 2-3 minutes. Not happened since. I was in my 20's and had bad sciatica at the time, im now in my 40's with no sciatica. Neuro said I couldn't have stamped the pins and needles away if it had been real ms damage?