Could it be MS? Advice appreciated

New diagnosis and before diagnosis
,
1

Hello,

I am not sure what I am looking for, maybe advice or some reassurance?

I am a 36 year old female who has been having some symptoms of what could be MS over the last 5 years.

4 years ago I had a major disc prolapse in my neck (still don’t know what caused it, no accident such as a fall etc) after going to the doctors with loss of feeling in my right hand and pain in my neck. The disc prolapse was crushing my spinal cord and that this was the cause for the symptoms displayed.

I later had ACDF surgery to remove the disc.

The symptoms are still ongoing, I get pins and needles in my right hand, loss of feeling in my hand where I cannot grab anything and pain in my neck and shoulder. I had a further 2 MRI’s where the consultant couldn’t find any explanation for it and I later had a nerve block root injection that gave me some relief for a few months. He mentioned i could have some nerve damage and had physio for a few weeks. That didn’t help in the slightest and I haven’t gone back since.

During this (2 years ago) I had an eye test and the Optician was concerned about my right eye and how pale it was. I had been complaining of pain behind my eye and some headaches/floaters. I was referred to the eye hospital who done some basic tests and put it down to Anaemia and a Vitamin D deficiency that my blood tests had revealed. Due to COVID I had no follow up appointment.

I was then due my eye test this year (they recommended I have another in a year instead of two) and my eye pain was still ongoing. I also had a couple of instances where I would have a shooting pain in my cheekbone that would literally just come out the blue and shock me. My disc was still pale and the optician (different to last one I seen) insisted in go back to my GP and make a referral to Neurology as I was also still having the neck pain and pins and needles in my hand.

Fast forward to this week and I had my appointment with Neurology who completed a few tests. My right side is weaker than my left and I didn’t do very well reading the letters on the test from my right eye. It was also noticed that colour is not as bright when compared to my left. She has referred me for a MRI on my head and will look into all my past MRI scans on my neck. I also had bloods done.

When I put these symptoms into google (I know I shouldn’t), MS pops up a lot and although she didn’t say what it could be she mentioned that the neck trouble could be related to my eye trouble. Could this be MS?

I work in IT and have a demanding job where I spend long periods of time of my laptop so I have always put my eye and neck pain down to this.

I do struggle with nausea because of vertigo where I am on a screen for a long time so again could be job related.

Just after some advice, many thanks for reading!

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Of course it could be, but I don’t really think so. Sounds more to me like you have bigger issues with your neck/spine that they need to focus on. Regardless of what it may be, we’re here for you to talk to as you deal with this frustrating situation.

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Dr Google thinks everything is MS, which doesn’t mean he isn’t sometimes right - he sometimes is - just that he’s more often wrong. And we all consult him!

It sounds as though MS is certainly one of the things they will want to exclude as they try to find out what ails. That’s par for the course, and I’m glad that you are finally properly in the system and being thoroughly investigated. Nothing to do now but wait. until the testing process plays itself out.
I hope that you get some clarity soon. Good luck with it all.
Alison

4

are you thinking you have Optical neuritis? i have had it never realised i did, until eventually i had a VEP test which showed i had it bilaterally.

for years i had pain in my eyes on movement, felt sick and vertigo it was triggered a lot by heat. i did go blind twice in 2000.

You could try screen filters on your computer to avoid eye strain, and get into the habit of moving away from it as much as you can. bright light on computers makes me feel really uncomfortable.

Your neck could be down to sitting incorrectly at the computer causing a serious RSI.

I never had neck problems with my ON.

My advise as you asked. STOP GOOGLING lol, rest more off the computer.

Its good you now have an MRI scan but you need one on your spine too.

but its long road to diagnosis. so buckle up for a long ride.

good luck hun, i know its scary and kind of worrying. there is a test you can do its colour blind test, my neuro uses it for ON. some numbers i cannot see in colour plates.

sample. I have no idea what the number is lol.

colour

CC.

5

Stay away from Dr Google.

My god if I typed everything I was feeling into Google it would say take his ass to the vets and put him down haha

What you’re going through is rough and I’m sorry you’re struggling. Just let the specialist do there job and try to manage yourself best you can.

Good luck

6

lol…said bluntly @WellEarthed but i actually agree. google does more harm then good.

anyone who has MS warning. NOT EVERYTHING IS DOWN TO IT, that is the first thing. any issues with eyes you should talk to GP.

any other odd thing. I have had a friend recently pass away because she googled a pain in her back and it kept telling her (google) it was down to her RRMS EVEN though she had it from 1972. I begged her to see her GP this is way before covid. Finally she did, but it was too late, she had cancer in her spine inoperable. it was very sad and hard for me to take as she was vibrant still working and was 71 years old.

x

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I didn’t mean to come across that blunt @Crazy_Chick lol

It is a hard one though,. I mean I don’t know what’s MS, what’s age, what’s normal, what isn’t.

You get an idea sometimes, other times you go with it. I give it 3 days if whatever it is still there I speak to someone.

Ms is very hard to diagnose as too many symptoms are associated with other diseases.

I think my bluntness was more, protect yourself from upset just don’t look. Still could be anything and maybe something curable. Always have hope. X

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nah i agree was saying it tongue in cheek i actually agree with you lol. x

9

Hello

(In my opinion!) All the above posts, put together make up a perfect answer.

  • Dr Google is sometimes right and sometimes wrong. Don’t trust the charlatan. Even though we all consult him (must be a man :face_with_hand_over_mouth:).

  • Anything could be neurological. Anything could be MS. Equally, your symptoms might not be related to MS.

  • CC is absolutely right about colour differentiation and optic neuritis. Apparently there is always some colour trouble with ON. Although I don’t have ON yet have trouble making out the number in her picture!!

  • I like WellEartheds comment too. Some days I’d like nothing more than a trip to the vets, a sweet needle of oblivion and that’s it. Over. Other days I’m reasonably content, despite being more like an old dog with myriad complaints than a middle aged woman.

Don’t hold your breath Gems, diagnosis often takes forever. And sometimes that’s a good thing. Just like a bell, once rung you can never unring it. Once you hear the words of any diagnosis, you can’t unhear them.

Sue

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Excellent reply hun, very good.

My neuroglost and my MS nurse always use the cards to see if one is having an attack of ON. Thought it was standard?

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Thank you everyone for taking the time to comment, it has really reassured me.

I did struggle with the colour diagram and at first thought it was a 5 and then realised it was a 9. Oops!

I will await the MRI (hopefully it will not take too long) and keep you posted on how things go. I hope everyone is well and thanks again for your help!

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Is it a 9? I thought it was an 8!!

:laughing:

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Could be a 6

The most important but of advice is to stay positive and happy but dlsave some for yourself.

Wish you all the best and please keep us updated

14

Oh please, will someone tell me what the number in CCs post is? A 5, 6, 8, 9? Something else?

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Search me. Were I a betting woman, I would hazard a 9, but I won’t be betting the farm on it.

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I’ve just taken a screenshot of it. Enlarged it. Changed the light setting. Still baffled. I am sticking at #8. Not that I’d bet my weeks ESA on it never mind the farm.

Ssssssss……

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It is 9. Though if you turn it upside down, then it is a 6!

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Omg, I just turned the image upside down. It’s definitely a 6. Which makes it a 9!! But I still can’t see the 9! To me, it’s both an 8 (right way up) and 6 (upside down). What a todo!! I’m a weirdo. Then again, what’s new?

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I can make out the 9 (after much struggling), but it’s not clear at all. Is it clear to anyone? I’ve never understood if they make the design vague on purpose or if that’s my way of seeing.

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no its a genuine test. its a 9 only cos i know the answer. this shows colour blindless and also if someone has had optical neuritis. Usually when my neuro does the cards it tells him if i am have an ON flare and he orders a VEP. the last one i had VEP because of the cards was the reason why i was diagnosed as it was way worse then the first lol.
xxxxx