MS? Update May

New diagnosis and before diagnosis
1

Hello,

Very new to this.

I am a little anxious … I have had flare-ups of Trigeminal Neuralgia for past 17 years (not constant, thankfully, but did lose a couple of teeth before diagnosis!!). However, because of this I have ignored the random, shooting numbness I get across my face at different times, and assumed it was due to dodgy trigeminal nerve, even though it happens when I’m not having a flare up

Anyway, for the past couple of years I have been stumbling a little, over nothing. It’s almost as if my right foot does a slight mis-step. At first, I thought it was my shoes, but changed shoes and it still happens. Not every day, but 4-5 days a week.

I have also been getting blurry vision for the past couple of years, on an off, but I was cross-eyed as a child - eye-patch and operation, so am thinking it could be caused by that. I have an appointment with optician on Thursday.

The reason I am starting to worry about MS is because back in March I got out of bed and fell over. There were no pins and needles or tingling, not like when you stand up after kneeling on your legs. It was as if my leg wasn’t there. COnfused, I tried to stand, and fell over again. It only lasted about 5 minutes and then I was fine and went to work, although my leg did ache a bit for the rest of the day.

With that and the stumbling, I was a bit worried, but convinced myself that it was nothing. I’ve also had a couple of falls over nothing, due to stumbling, and with one of them I am sure my leg just gave way, rather than me tripping, which is what usually happens.

However, between Christmas and New Year the same thing with my leg happened - I got out of bed and fell over. All okay again in about 5 minutes, but so weird. Leg just not there and when I tried to stand it crumpled like paper and I had to hold the wall.

I have been to doctor and had blood tests to rule out other conditions - all fine, and will go back to doctor after optician’s appointment.

I do also get the odd sharp, stabbing pains, but I’ve had them for the past couple of years too (I always make a joke and say someone’s sticking pins in my effigy), but now I am a bit concerned.

Any thoughts?

Marie :slight_smile:

2

Hi Marie,

Sounds like you’re having a bit of a rough time.

I’d go back to the Dr and maybe ask to be referred to a neurologist. Not saying it’s MS as it’s usually diagnosed by ruling out lots of other conditions because MS symptoms similar to other things.

My top tip is keep a symptom diary and write everything down in date order. So dates your legs gave up, how long it lasted any symptoms etc. Also write down when you saw the Dr and what tests they did and what the outcome was. These things are sometimes difficult to remember.

Stay positive! Hope it isn’t MS but if it is this site is the one to be on for tips and help.

Jen

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Thank you, Jen.

I will go back to doctor after optician’s appointment - and thank you for tip about keeping a symptom diary.

Have a good day

Marie :slight_smile:

4

Hello, Blood tests all came back clear, so no B12 deficiency causing leg weakness. Eye test done. Not optic neuritis thankfully, just a sligh astigmatism. However, still doing the stumbling, and worried that leg might give way again, but hasn’t so far. For past couple of weeks I have had intense cold feeling in feet, going up calves, really quite painful, although my legs feel warm to the touch. Went back to doctor and am being sent for nerve conduction tests. Should I be nervous?

5

Update. Had nerve conduction tests in February - no peripheral nerve damage. The intense cold pain in my feet and calves had gone by this point, although the tingling/pins and needles remain. I also had an Somatosensory test, which showed responses on left side marginally slower, but the neurophysiologist wasn’t concerned. He kind of shrugged and said that sometimes our bodies do funny things, so I took him at his work and went home. Still had pins and needles in feet, and stumbling occasionally, but overall felt OK, and left leg didn’t give way anymore. However, about 3 weeks ago I noticed that the three fingertips on my right hand (excluding thumb and little finger) had reduced sensation. I was putting my moisturiser on in the morning and at night, and it kind of felt like I was slapping it on!! Took me a few days to consciously acknowledge this, and when I put my cream on with left hand instead, I could feel my face and its contours in much more details. The fingers also don’t always want to type, or pick up small things (like cake crumbs from my plate - the important stuff!). I was going to put this down to bodies doing funny things again, but for the past week I have had intense tingling along the trigeminal nerves on both sides of my face. It doesn’t hurt - I have had trigeminal neuralgia several times in the past, and know how painful that can be. This feels more like the shooting numbness when the dentist gives you anaesthetic, before your face goes entirely numb. I can still move my face, it’s like the pre-numb tingling, if that makes sense. Anyway, do you think perhaps I should stop putting this down to my body doing funny things and go back to the doctor, or will they think I am a hyperchondriac? Marie :slight_smile:

6

Update. Went to doctor’s today - he did lots of tests and I’ve been referred to hospital for an emergency MRI in next 2 weeks, and have an appointment now with neurologist on 10th June …

Doctor mentioned something called clonus?

I also had decreased heel/toe coordination.

Will report back when I know more

Marie :slight_smile:

7

Hello Marie

It’s a good thing that the doctors are now treating your symptoms a bit more seriously and giving you an MRI. To be honest, I can’t imagine why they wouldn’t have done that in January. But they didn’t, so that’s that. At least now you may get some answers.

Clonus is related to spasms, it’s a sort of involuntary muscle tensing and relaxing caused by the nerves. It can be slight or more noticeable. The coordination of heel to toe could also be part of the same thing, it’s certainly one of the things that indicates to a neurologist that something is awry with your nerves.

The MRI will have been reported on by the radiographer and all the results of your various tests, together with your physical exam will be considered so you should get something concrete from your appointment on 10th May.

Keep us informed of what happens. It’s good that you’ve been keeping this thread going with your updates.

Best of luck.

Sue

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Hi good luck for your appointment let us know :slight_smile:

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Oops, just seen the date mistake, obviously I meant June! Thanks for updating the thread shlaaaaaa89.

Good luck for 10th June Marie.

1 Like
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I got the date wrong too! It’s actually 11th June :slight_smile: Feeling a bit nervous, but will keep you all posted. Many thanks for your support

Marie x

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Hello again, Well, I saw my neurologist today. MRI all clear - so not MS. Very relieved. He said he thinks it is functional neurological disorder, and the past 18 months have been pretty stressful, so I think maybe my body has manifested my symptoms unconsciously. Wishing you all the very best, and thank you for your support :slight_smile:

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Really good to hear Marie.

Stay stress free as much as you can and keep well.

Sue