Can someone advise with my symptoms

Everyday living
1

Hi I will try keep this short, I want some advise about my symptoms to see if others has similar and what you all think?

about a year ago I started getting pins and needles on the top of my foot, I never thought more of it other then it must have been from being in a funny position at work,

about a month later I started with strong pins and needles in my back just under the shoulder blade but slightly to the centre, I get this a lot especially when washing baby bottles in sink or holding my baby around chest hight

then I started to think more of it so booked with doc, before I went to see him I then starting with sharpe stabbing pain in my big toe opposite foot to pins and needles! Also my left hand was so painful if I try grip with my thumb and fingers it was agony I must mention I have Crohn’s disease too so thought it all might be linked but had tests done and all vitamins etc all ok

I also felt exhausted all the time but that may have been my crohns or the fact we have a baby! By the time I got to see a neuro the stabbing in toe, pins and needles in foot and hand pain and stopped!

I had the electrical test thing done I asked the guy if it was ok and he said there is something but your consultant will look at all results together and see , I had a MRI of spine and head after having this done my eyes was blurry for many hours, and got back all results was ok apart from mild ware and tear on spine

when I asked him what was causing the tingling in back he made it out like it’s all in my head and when I asked about my eyes after the scan he did same, I also mentioned the guy doing electrical test said there was something, he just said it all says ok here!

That was about 9 months ago I still get tingling in my back and now the odd tingling in odd places of body but not for long! Odd time my big toe feels slightly numb but only on end of the skin and a wee a lot but sort of always have

i got talking to a lady with ms who said that’s how she started and to go back

can MRI be all clear but have ms?

shoukd I go back now or wait to see if things get worse so maybe more clear??

Hi I will try keep this short, I want some advise about my symptoms to see if others has similar and what you all think?

about a year ago I started getting pins and needles on the top of my foot, I never thought more of it other then it must have been from being in a funny position at work,

about a month later I started with strong pins and needles in my back just under the shoulder blade but slightly to the centre, I get this a lot especially when washing baby bottles in sink or holding my baby around chest hight

then I started to think more of it so booked with doc, before I went to see him I then starting with sharpe stabbing pain in my big toe opposite foot to pins and needles! Also my left hand was so painful if I try grip with my thumb and fingers it was agony I must mention I have Crohn’s disease too so thought it all might be linked but had tests done and all vitamins etc all ok

I also felt exhausted all the time but that may have been my crohns or the fact we have a baby! By the time I got to see a neuro the stabbing in toe, pins and needles in foot and hand pain and stopped!

I had the electrical test thing done I asked the guy if it was ok and he said there is something but your consultant will look at all results together and see , I had a MRI of spine and head after having this done my eyes was blurry for many hours, and got back all results was ok apart from mild ware and tear on spine

when I asked him what was causing the tingling in back he made it out like it’s all in my head and when I asked about my eyes after the scan he did same, I also mentioned the guy doing electrical test said there was something, he just said it all says ok here!

That was about 9 months ago I still get tingling in my back and now the odd tingling in odd places of body but not for long! Odd time my big toe feels slightly numb but only on end of the skin

i got talking to a lady with ms who said she started like this

Should I go back and demand testing again?

or should I wait to see if gets worse then more Likely to find something?

Thanks in advance

2

MS is notoriously difficult to diagnose, but if you’re unhappy then you should see your neuro again. In the meantime keep a diary of your symptoms, or better still make sure the episodes are reported to your GP for future reference. Your symptoms could point to many other things, not necessarily MS.

Good luck

Rosina x

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I can assure you an MRI can’t damage your eyes, as there is no radiation involved, so that part at least must be either psychological or a coincidence. Some neurological symptoms are aggravated by stress, so if you got stressed about the scan (most people would - it’s not a “normal” sort of thing, after all), that by itself might explain why you noticed increased symptoms immediately afterwards.

Personally, I’m a great believer that if you do have anything serious, the truth will out eventually.

If your MRI showed nothing, and your symptoms are mild and have not worsened, I’m not sure there is a lot of mileage in pushing further for answers at the moment, as it doesn’t look as if they will have any new evidence to examine.

But certainly if there is anything new, or anything gets worse, then would be a good time to pursue it, as there would be a chance of something new for them to find.

Tina

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Thanks, it was a lady with ms who said at 1st her mri was ok then a few years later it then showed the damage so I wanted to ask on her for a wider range of people’s opinion, I don’t necessary think it’s ms but something not right! Thanks for the advice I will keep notes

cheers :slight_smile:

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Thanks for your reply, the eye thing did not worry me about any damage I wondered if it could have just been a bit of inflammation that can be triggered? I was def not stressed

a little about me at 25 had suspected Tia mini stroke, at 26 has myopericarditis and was on a heart monitor for 5 days and they was treating me for a heart attack, had angiogram etc done 3 months later major bowell surgery, as I mentioned I have crohns so had lots of mri’s done in the passed and after what been through believe me a mri does not stress me out lol

the lady I spoke to said her mri was clear but then a few years later show damage so wanted to ask to get a wider view from you all. It may not be ms and I hope not but I know something it not right maybe just nerve damage from work but something wrong,

i think ink your right about waiting prob no point as they won’t find anything

oh I forgot to say my results letter said her results and I’m a he so I did ask they had not mixed them up lol

thanks for comments so far :slight_smile:

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Her mri could have been clear then 20 years later show lesions but my mri showed inflammation but I had inflammation in my eyes before mri if your eye sight gets worse have an eye test I did and got referred to eye specialist still same but it’s down to Ms.

Back to eye specialist this month in need of answers good luck x

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Thanks alysea, that’s the only time I’ve had blurry eyes, I had mri of bowel a couple of months ago and it didn’t really do it and I had contrast for bowel too which can effect your vision, which makes me wonder if it was inflammation at the time? When I look at my phone it was just blurry. Is that what inflammation does or do you temp lose your sight? From what iv read I think your symptoms need to be pretty bad before they can diagnose ms, like drop foot, balance problems etc… Does that seem to be the case? Also when you have gripping problems is it loss if strength? Or pain as I felt my hand was as strong but the pain stopped me using it.

And did people have other symptoms years before the bigger ones?

Thanks again

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I deteriorated over 12 months but the first sign was my eye sight it’s like floaters across your field of sight I can see fine but I see white and black dots all the time they test my eyes all time I pass tests I had a 2nd opinion and they say uveitis although if I had a decent gp at time I would of been diagnosed sooner.

I went to my GP for a year he kept saying nothing was wrong eyes started first then a few month later legs giving way struggled to walk and borrowed aids so 17 months or so I have progressive Ms not left house for a year but I want to waiting for stiffness to bugger off.

I have been waiting since September for a Ms nurse stupid so I am having to ask my GP for meds but he’s fabulous my last gp worse ever glad I changed in January or I would not have been diagnosed just hate the stiffness I got pins and needles before legs started to give way my MRI showed well neuros report says typical brain lesions nerve damage in both eyes and obands or something positive lumbar puncture long process so be patent I did lose my balance after 6 months hope you don’t have it Xx

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Hi so do I read that right your a male? Not that it makes any difference but i was reading baby bottles…lol so linked you to a female…

Chrones can cause all these symptoms though perhaps you havent had a flare, but maybe you just never noticed them before if they were just in the background.

You have been through the ringer too. What happened about the TIA? Was it a confirmed stroke?

MS can start with very odd and vague symptoms, i think i had my first one in 1980 and it too was pins and needles in my left arm when i woke up it would be dead for ages, but i got told by my doctor at time it was probably because i smoked 5 cigs a day lol.

I even went blind on holiday and it happened when i came back got told it was probably just the heat…

It took forever to get a diagnosis, but i just waited because i knew if it was something horrible it would finally present itself and it did with all kinds of positive results including visual tests, LP, and MRI…and stuff but even they were never like wow you have this lol…

I would just do a wait and see now.

Stressing over if you have MS or not is going to make your symptoms worse believe me, be there done that.

Just go about your daily life and see what happens. If it is MS believe me it will bite you in the bum soon enough.

It is hard having stuff and not knowing why. I went blind lol…over a minute most freaking thing happened to me in my life TWICE and it was dismissed…the heat…honestly…

Interested in knowing though what happened about TIA?

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I’m male my wife has me well trained the bottle washing is my job lol

the Tia, right what happened was I was at work chatting to a customer, I went to undo a screw with my right had and I was miles away from it (to the left) so I thought what am I doing I need to move over to right and my arm went further to the left, I then had to use my left hand to move over my right I struggled judging distance too,

one neuro said as I’d had pain in my neck for two days before that just suddenly went that a common place for clots it too main arteries in neck, she thought a clot had moved and broken up as is went round causing symptoms, she sent me for mri but did say sometime it leaves traces sometimes not!

But when I went for results saw a different neuro who said it was all clear and would have been a migraine, I asked about it being a Tia and not showing and he said no if it was Tia it would show,

so surprise surprise two neuro saying different, anyway I’d not had any symptoms since and knew it was all clear so thought just leave it and at least I can put down migraine on life insurance forms lol but to this day I can’t get critical illness cover because of either crohns or “unexplained neuro symptoms”

so that’s what happened lol

losing your sight must have been scary how long before diagnosed to you start with symptoms?

Thanks

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Floaters in sight black and white I get the same the white ones are like bright lights? But I thought everyone get that I thought it was blood pressure or something, I only get it prob 2 to 3 times a year and lasts only a min really, so inflammation can cause that? Did you go to hospital for eye test to find it or just specs avers or something?

one thing I forgot that might just be normal when I take dog for a walk and it’s cold ish I get hot aches all over my legs that really itchy too, is that something everyone gets when it’s cold?

Thanks

Thanks

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Hi there mornng, gosh i could have done with you 43 years ago lol when I had my first daughter. My husband was useless with bottles and nappies lol…

Wow yes you have been through a few scarey things hun.

As you know Crohns is an auto immune disorder and can cause inflammatory response in your body. This in itself can cause blurry vision etc…

Your field perception must have been scary, like my blindness I just thought OMG whats happening, then it slowly came back but blurry. Being in Brazil on holiday at the time we had a very good doctor who checked me out and told me it wasnt a stroke but i must see my doctor when i went back to UK. Before i could do that 2 days after i arrived home it happened again, so I did see my doctor who was useless…never even checked my eyes or BP…and put it down to heat…

That was in 2000. In 2003/2004 i had awful problems with my eyes, pain, blurry, all kinds of things, told it was DRY EYES lol…

2004 had a major relapse with UTI and vertigo was off work for 6 months couldnt get off settee for fatigue, it resolved itself was told it was all stress related lol. 2004 - 2006 ongoing problems, balance issues, burning legs, heat intolerance, etc, 2006 september big relapse. Even with loads of positive tests including one to confirm i had Optical Nueritis in both eyes in the range for MS diangosis, because of my AGE, and the way it was presenting i was told probably, or maybe…anyway eventually about 2 years ago, it was agreed with a private doctor and my neuro it was MS, but i also have a co infection of Lymes too.

It is a long diagnosis.

When i am fatigued i get black spots and spiders web and was told it was my age.

Every neuro thinks differently.

I am now being test for rare disease as I have been having memory losses since 2007.

I was told with my first lot of symptoms they were non specific and transient…

I would now wait and see what happens, if it is MS it will eventually show itself. You can help yourself in the meantime and really take care of your diet which i am sure you do with Crohns…

Are you gluten free?

Sorry i did waffle on there lol…never ask me a direct question ha ha its like getting back War and Peace lol. xxx

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Hi no I’m not gluten free diet try to eat well but a lot of the good stuff is no good for the bowels eg veg is hard for the bowel to move along, yes I will wait now and see although today started with the pain in my hand which is funny it was this time last year I had it! But i thought ms hand pain was worse winter?? So I think the hand thing may be caused by something else ( not arthritis tho already been tested) it’s strange really at mo if I bend my fingers are apply pressure to the fingers the pain shoots to knuckle area but feels like it’s in the bone if that makes sense,

i feel eel better after writing on here as the neuro guy made me feel like no one else would take me seriously, next time I do go to docs I’m wearing a hat that says "before you ask I’m not stressed or depressed lol

thanks again

14

Mine never go away they stop me reading tiny print or seeing things small and bright lights make it worse so diagnosed uveitis about a year before my Ms diagnoses I had tests for eyes they said its caused by a auto immune condition which he was right it’s inflammation at the back of my eyes I thought it would clear up but nope, but back at eye specialist in 2 weeks see what he says xx

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I hope it goes well for you, it must be horrible all the time

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It is but think I’m used to it now it needs to bugger off lol good luck xx