Has anyone else experienced these symptoms?

New diagnosis and before diagnosis
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1

Hi

I’m 38 year old female and I’m just wondering if anyone else can relate to what’s going on?

I’ll try keep this as short as possible!

At the beginning of September last year whilst I was abroad on holiday my left bottom lip & chin started tingling, I also felt a loss of sensation in my tongue & side of face not numb but it didn’t feel the same as the right side! When I returned home I booked on at the dentist who did X-rays etc & couldn’t find a problem so referred me to a specialist maxo something or other. I didn’t receive an appointment till March this year & the tingling stopped in January so I put it down to a trapped nerve & completely forgot about it.

May this year one morning while I was getting ready for work my mouth & face just went numb on the right side. It was as though someone drew a line down the centre of my face with everything numb on one side & not at all on the other. Even my tongue, teeth, gums, nose, ear & forehead were affected. I got in at the doctors within an hour & he did a few checks but had no idea why it happened, he did mention migraine but was unsure as I’d only ever had 2 in my life which both presented the same, I also don’t suffer from headaches either. He did bloods b12, thyroid, vitd etc and referred me to neurology.

As the day went on I started feeling dizzy and extremely tired. The following day I was being sick from feeling so dizzy so I decided to go to a&e. They requested a ct scan which showed a hypodensity in my left frontal lobe, given my age they decided to do an mri. I was kept on a stroke ward overnight and got my results the next day when the specialist did his rounds. I was told it wasn’t a stroke but it had picked up hypertensities in the subcortial, pericallosal, callosal and bilaterally in the periventricular with overall appearances highly suspicious of demyelination I was in shock to say the least, I’d never considered anything like that.

My results were sent to neurology who requested bloods, full spine mri & a chest xray. I was aloud to come back and do the mri & xray as an outpatient which I was grateful for at the time. The bloods were taken at the hospital.

The numbness last 3 weeks but I was left with strong tingling in my tongue & face till a few weeks ago, now that’s stopped too. 5 weeks after the facial symptoms started my right leg was fizzing from top to bottom it was awful, on 2 occasions when I stood from a sitting position it went dead for seconds. Both times this happened the tingling shot up the right side of my body to my head & I went really dizzy. After 2 or so weeks this also stopped!

I haven’t got a clue what’s going on, but I’m feeling ok right now pretty much back to my normal self. I was just wondering if anyone else had anything similar happen to them and what the out come was? I’ve had my spine mri and chest xray but it’s up to a 10 week wait on the nhs for results. I’m currently on week 8 & a part of me just wants to forget it ever happened.

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Hello Broomers. Well yes I did experience some symptoms similar to yours. This was over a period of months - perhaps a year - and they faded away. I saw my GP and had CT scans which revealed nothing and we discussed the possibility of MS but left things as ‘watch and wait ‘. I now can’t remember how later it was - maybe a year - but I developed optic neuritis ( lost pretty much all vision in my right eye) which led to an MRI of my brain and the finding that I had quite a few lesions and the diagnosis of MS. This was all about 19 years ago or a little longer for the early tingling sensations and sort of numbness in areas of my face.

not in anyway wishing MS on you but when you get the results from the spine MRI it might be worth asking about a scan of your head/ brain .

P.S my vision returned over a period of months and now, at 71 years old I’m still mobile although struggle a bit.

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So have you had an MS diagnosis from a Neurologist or not? Best to start there.

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Hi Hank_Dogs

Thank you so much for your reply, it’s good to hear that 19 or so years later you’re still doing ok and able to manage the terrible symptoms of this disease. I do know two people who have ms also - one is a wheelchair user, the other runs marathons. It’s crazy how differently everyone is affected.

I did have a brain mri in hospital that showed lesions, I was curious about the locations and if they could cause my symptoms. After a bit of googling that is what led me to this forum!

It’s hard to believe right now there is anything wrong with me, I guess all I can do is wait for my spinal results and go from there.

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No, no diagnosis. When I was in hospital the stroke specialist did some reflex tests and said I didn’t present like someone who had ms! That was the first time it had been mentioned. He then went on to say that lesions in the corpus collosum are very rare in any other demyelinating disease. So I took it as they are suspecting ms. You are completely right until I see the neurologist with all my results put together I’m just guessing!

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I should have added that after the optic neuritis I didn’t have anymore symptoms for about 8 years ( might have got the number wrong but it was a long time) . Then one day walking around town I suddenly had trouble moving my right leg. It recovered after sitting down for a while but from then on I experienced problems after about an hour’s walking. Over the years the time has reduced

7

How are you getting on? I’m having similar symptoms. In January it started with a sharp pain in chest and back leading to a&e visit thinking it was heart related, tests didn’t show what was wrong.

In March I was struggling with memory and word finding. I went to dr and they signed me off work with burnout. Then in April whilst off I was extremely fatigued and developed a burning/ tingling sensation left side of my face and pain in temple and back of head. Even when pain wasn’t there I had this strange sensation like I’d been stung with nettles across face. CT scan in a&e didn’t find a bleed and I was told likely migraine or Trigeminal neuralgia. Neither seemed to fit so visited gp who referred me to headache specialist. I questioned ms but he told me he don’t think I should be thinking about that.

The symptoms seemed to disappear from Mid May and returned mid August. Face tingling stronger and eye hurting this time, pins and needles in hands and fingertips. Tickling sensation on nose making me itch. Concentration, memory issues and word recall problems again.

I’ve just had a head mri and waiting for my results. My biggest fear is not having a diagnosis and made to feel like it’s in my head.

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Hi DDee

I really hope you’re doing ok? You must be extremely worried, the worst part is waiting around for scan results and follow up appointments hoping that you’ll get an answer but knowing that it’ll probably take a lot longer or you won’t even get any answers!!

When my face & mouth went numb it lasted 3 weeks but after that time I was left with strange sensations in my teeth, tongue & on my face. Eating or brushing my teeth made it more noticeable. My tongue felt burnt and when I ate food a sharp stabbing pain would shoot into my ear and my face would tingle a lot. This has stopped completely now!!

Have you heard of hemiplegic migraine, when I was in hospital a nurse was telling me they get a lot of people who experience these and have never heard of them before! Dr google told me I couldn’t have had one of them because the numbness lasts hours to days, not weeks. But if you go on forums & read peoples experiences with them it tells a different story. They seem to have had them for a lot of years tho, I’ve only ever had two migraines in my life that I know of!!!

I really hope your head mri comes back normal but I also hope you get answers too. I don’t know about you but these symptoms are a big deal to us but drs don’t seem that bothered! I don’t have any update as I’m still waiting for an appointment with a neurologist. I honestly don’t know what they’ll say about the hypertensities on my brain but it also worry’s me that they must have thought something of them in the first place to start sending me for more tests.