Please tell me why I don't have MS

[SlowlyGoingUnsane]

Name changed to hide my craycray!

Health anxiety spiking a bit tonight. Some help to talk me down would be good.

I have a recurring numb patch on my left thigh (for years). Went to the doctor about it before Xmas and diagnosed bursitis in hip. Waiting for physio.

I also have (but haven't mentioned to doc) another patch on my back where bra strap goes that is sometimes a bit funny but I assumed due to bra strap compression

Two weeks ago a third patch appeared on my right bum cheek. About the size of my fist.

Googled symptoms and it led me to ms.

I don't have any of the other symptoms on the list except occasional fatigue (who doesn't) and arguably clumsiness but rational me knows I'm reaching here.

However about three years ago I went partially blind in one eye for about 6 weeks. Had lots of investigations at Moorfields and was diagnosed with MEWDS https://en.m.wikipedia.org/wiki/Multipleevanescenttwhitedottsyndrome

now worried this was a misdiagnosis.

I do get quite anxious and tend to go to worst case scenario in these situations. I also absolutely hate going to the doctor and wasting their time for my crazyness so I work myself into a state where I am convinced I have something dreadful but would rather worry alone than discuss it.

So any thoughts/help?

Moorfields is a world renowned eye hospital and I'd eat my hat if they've missed an MS related optic neuritis!
If your problem is anxiety, leading to obsessing about your health, it might be helpful to have some counselling. Why not approach your GP to discuss it.

My husband has MS, and his first symptom was the optical neuritis, diagnosed at Moorfields. I doubt that they would get the diagnosis wrong, as they see it all the time.

If you're really concerned, you could ask your GP to arrange an MRI?

I get numb toes, bum cheeks, face etc when my B12 levels are low. You can buy sub-lingual (under the tongue) dissolving tablets or sprays that get absorbed quickly and boost your levels to save you having injections.

Thanks all that's really helpful. I'll try taking b12 and see if that changes anything. Do you get random Numb patches all over if yours is low?

I know I should just talk to the doctor but I get really paranoid about them thinking I'm crazy so the idea of going in and telling them that I have anxiety just makes me more anxious. Bit of a ridiculous cycle I know!

I know, I do a lot of doctor googling too and end up winding myself up! But funnily enough it was googling the numbness that led to me asking for a B12 test and it turned out it was low. I had numb patches, one thigh, two or three toes, one cheek on my face etc (also trouble with orgasms, which was what made me take it seriously!) I can feel when I'm getting low and a high strength tablet every now and again seems to keep it topped up as your body can store it pretty well I believe.

i’ve had numb patches when anxiety has been high, particularly my health anxiety. numb thigh, numb toes, numb tingly fingers, even numb tingly face. i think you subconciously tense your muscles when stressed.

you sound like you need a good sports massage, and a few months of taking vitamins and having a nice big smoothie everyday get your blood tested by your GP, just to check for low iron or low b12. be nice to yourself. get some magnesium spray, some vitamin D.

also, MS isnt a death sentence. a girl in my uni class had it, and she was fully expected to live a long and normal healthy life. it can relapse and remit, it isnt just a rapid decline.

I don't think you are silly - those are worrying neurological symptoms. Quite frankly, you have to look out for yourself, in particular with a weird illness like MS. From my own experience I would not automatically trust the not-optic-neuritis diagnosis. If you've had (whatever kind of) neurological vision issues before and are having neuro symptoms now, I'd talk very seriously about these concerns with your gp and see if you can get it looked into. I let my MS lie untreated for too long due to a breezy neurologist who assumed I'd be fine, and I am suffering for it now, with quite extensive myelin damage.

Esk1mo, the girl in your uni class is very fortunate, but although many people will live long lives with ms, the majority will not be healthy compared to ...well, healthy people!

Just wrote a long post that seems to have disappeared... sorry if it turns up again!

Thanks mmebuttox, do you mind if I ask what your first symptoms were?

I guess I'm just in a bit of a place where I don't trust my own judgement- maybe I'm paranoid or maybe they are really out to get me

I'll book a doctors appointment and try to be calm about going.

OP, now that's in your mind, it's likely to remain, so your only option is to ask your GP for an MRI and ask for both spine and head. I've been having symptoms for some time now and haven't managed to get to the bottom of it. MS didn't really cross my mind because my first symptoms were not typical of MS. Also, I went through a phase 10 years ago with neurological symptoms, had an full MRI then and it all came back normal.

This time, had a head MRI although more as concern with potential tumour. My GP said that it had come back normal, however, when I had a print out of it, it said that there were two tiny hyperintensities, which of course now makes me wonder, although lots of reading as indicated that these could just be blood vessels. It is making me wonder though if I should now ask for a spine MRI too.

Anxiety does a lot of very odd things and indeed, I also wonder whether I have another condition that triggers anxiety (possibly thyroid or simply the menopause) which then triggers the anxiety, which of course triggers the symptoms.

10 years ago when I asked my GP for a referral to a neurologist, he said he didn't believe it was MS but felt I had reach the stage that I wouldn't move on without a specialist so was happy to refer me. Neurologist said that he didn't think it was MS, but agreed to the MRI to ease my mind. It worked as after that, I moved on mentally and all my symptoms disappeared with it.

By the way, when you mean 'numb' patch, what do you mean? I often read people mentioning numbness, but I don't know if they mean that dead feeling you get when you've sat in the same position for some time or the fact that if you put a needle in that part, you wouldn't feel it. I get the former a lot, but never had the latter.

my colleague had sight problems as the first sign of ms. she went to moorfields and it was immediately obvious to them that it was likely MS. if i remember correctly she was immediately referred elsewhere for other tests ??? neurology and was diagnosed shortly after.

I would describe it as a patches of altered sensations. I can still feel pressure there but it is a dulled sensation as if i am touching myself through a blanket instead of bare skin. And sometime I will get tingling/pins and needles and an itchy creepy/hyper irritable sensation.

It's consistently in the same places and each area has a centre spot which is most numb and the other sensations tend to go out towards the edges. They feel like they itch under the skin.

AJP You're right that I do think optic neuritis would be more obvious than the very obscure thing they eventually diagnosed me with. It wasn't painful either.

Mine was central blindness in both eyes, so not optic neuritis. Was a lesion further along in my visual pathway that was causing it.

Well I've got an appointment for next Friday. Thanks for the help everyone. I'll let you know how it goes.

www.mstrust.org.uk/a-z/lhermittes-sign

do you get this? when i was anxious about
having MS, it made me feel better that i never had this. only some people get it, but it was still a crumb of comfort to me.

I have all sorts of odd neurological symptoms and have for a few years. I have b12 deficiency and am on injections for that. I have numb patches, facial tingling, creeping scalp and shoulder blade, pins and needles, i have take Gabapentin to relieve them. i have visual disturbances, flickering, flashes, blurred vision. I have balance problems too. I also have terrible fatigue, i had to give up work. I have been diagnosed with fibromyalgia.

I did see a neurologist and had brain and spine MRI which showed high signal areas throughout the white matter, (still dont know what they are) i then had a lumbar puncture but it was clear so not MS

So yes you can have all these symptoms and not have MS

OP, can I ask how old you are? Because all these can be signs of the perimenopause too.

It doesn't sound like MS , being honest (diagnosed 2001 here) but it's such an odd disease, get the MRi and get it ruled out.

I'm only 33 so I hope is not menopause! Periods very regular and normal.

Also I know I'm no expert and coming from a place of three anxious days down the google rabbit hole but are you sure you are happy with your diagnosis Borg? I didn't think there was any one test that could definitely rule MS in/out on its own and it seems like you have a lot of life changing symptoms to be left without a diagnosis/explanation?

I also have no signs of ms in my CSF, but I have a 'highly active' case of RRMS that has essentially ravaged me (under control with Tysabri but I've got lasting damage)

Slowlygoinginsane, I've been there, and you are probably going through ups and downs at the moment, highly aware of any twinges in your body, one minute gripped by panic, the other almost accepting the diagnosis and in the meantime, feeling absolutely miserable.

Your GP might be able to agree for your to have an MRI without needing to refer you, but ultimately, this is likely to be the only thing that will make you move on so try to get one done as quickly as possible. In all likelihood, it will come back fine and it wouldn't be surprising if when it does, all your symptoms disappear at the same time, but if not, at least you can start doing something about it.

To be totally honest, no, I was not happy at the time with my diagnosis, mainly with the "nothing to suggest MS" I got from the Neurologist, I didnt even see him for followup, it was just in a copy letter that I received that he sent to my GP. He said adopt a watch and wait policy and treat symptoms. (which are treated with Gabapentin). I would really like an opinion on the high signal areas in my brain, I was just told "there are loads" but no-one has any opinion on what they are. So I just try to live as best I can with the symptoms I have.

TheBorgCollective, I've done a lot of reading on the matter, and have read that when B12 deficiency gets really bad, to the point that neurological damage is done, it can show on mri as lesions similar to MS. I have actually read on the MS society website (I think it was this one) that it is believed that a number of people diagnosed with MS actually suffer from Pernicious Anaemia.

How long ago were you diagnosed with B12 deficiency and how long have you had injections for? How often do you have them? Are your symptoms better after the injections?