Young, scared and feeling a little crazy

Hi I am new here and I guess I’m just trying to seek some reassurance. I am 25F, scared and starting to feel like I’m making this all up.
Back in march I lost the peripheral vision in my left eye very suddenly and I noticed that i was more fatigued and struggling more when trying to focus on work and uni. I was having muscle spasms and shooting pains in my limbs also (all symptoms I’ve experienced before EXCEPT for the loss of vision). SO I went to my optician who were a bit baffled and recommended I go to A&E. So I went and saw a lovely Dr who suspected that I have optic neuritis. He sent me to Moorfields to see a specialist the next day who could not find anything physically wrong with my eye at all and blamed it on my weight. I stood my ground as I know my body and when things aren’t right. The eye specialist sent me back to A&E where I had a head CT and he also referred me for an MRI. Head CT came back clear. In the mean time I went to my GP to discuss my symptoms and she mentioned MS.

I’ve now had the MRI and seen the eye specialist for a follow up. He found in the follow up a ‘definite change in my optic nerve’ and he said that the MRI showed ‘no swelling or tumours but i want a second opinion’ (he was initially looking for intracranial hypertension). He has referred me to see a neurologist and I have contacted Neurology to make sure they have my referral because I now have right sided weakness, tingles in my hands and feet, an intermittent tremor in my right hand, shooting pains from my elbow and knees making fingers and toes feel numb, cold and hot water sensations down my leg and a very wobbly right leg. They didn’t seem to want to know and told me to tell my GP all of that to expedite my appointment but the GP said they can’t.

I also have both MS and parkinsons in the family on my mothers side.

If you’ve made it this far, what should I do? The urgent waiting list is 4 months long and neurology has basically told me ‘we’ll see you in october’ I’ve lived like this for 3 months. I don’t know how much longer I can bear and I’m worried about permanent damage being done. Should I wait the 4 months for NHS or go private?

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Loss of peripheral vision would be helped by losing weight? Really? I would like to ask to doctor to refer me to the scientific study on which that assertion is based.

If you know which neurologist you have been referred to (and ask if you don’t know) the your best friend might be his/her secretary. They can be very helpful and useful allies in the campaign to be seen sooner. (The trouble with going private when you have already had an MRI on the NHS is that the neurologist you see private might not have access to that scan, which would be a bit of a waste of money. If you have the scan on a memory stick, that might be a different matter, but getting that can take time too.) In your shoes, I would start with the consultant’s secretary and then broaden your range if you don’t get anywhere.

Hi there. Please try not to stress out. My MS started with optic neuritis many moons ago pre DMDs etc and the only thing I was given was prednisolone. Despite this I have had and still have a good life even though I am very limited in what I’m able to do for myself. Mind you it might of course be my age - 81 next month!! I can’t answer the question you put that must be your decision but I will just say please try not to stress too much, that will do no good at all, Stay calm and i’m sure all will be well in the end. Love Essiexx


I am trying my best to stay calm and not stress (mental health practitioner here so I have good strategies) but not knowing is the worst! I think at this point I will be seeking private. I saw my GP yesterday and she’s sent me for more blood tests (which i had 3 months ago, also back in september, and every time i’ve had these symptoms previously). We have a close family friend who has MS and I’m going to have a chat with her later today to see if she has any advice :slight_smile:

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Yeah apparently being over weight can cause intracranial hypertension which is where the brain swells and that can cause vision loss apparently. But the MRI proved him wrong and my OCT showed a change in my optic nerve so he started to take me seriously.
I’ve made an enquiry to a private hospital and asked that question about whether they will be able to access my MRI or whether I’ll have to/be able to get it from Moorfields. So I’m going to wait and see on that front.
I spoke to the Neurology secretary for the hospital (there’s only 2 neurologists at my local hospital and I can’t find either of them privately) and she said to speak with my GP (who were super unhelpful) so that’s kind of why I’m wanting to go private, I’m also lucky enough that my mum can help me fund it.

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Hi P

My MS first showed symptoms with a lack of peripheral vision in one eye. To cut a long story short, it was diagnosed as Optic Neuritis and is a common symptom with MS. My vision did return to around 95% of what it had been.

I went on to show symptoms of pins and needles, cramps, muscle pains, muscle spasms (Like butterflies under your skin, beating their wings). I also had fatigue and after around 7 months was diagnosed with Relapsing remitting MS.

I was lucky and went into remission for around 20 years with only a few relapses.

I think you need to get your doctor to refer you to a hospital that specialises in MS. This is only my feeling as I have no medical background and just recognise your symptoms. I have recently lost a lot mobility in my right leg and have drop foot. I have been re-diagnosed as SPMS or Secondary Progressive MS

Soon I get to try out FES or Functional Electronic Stimulus, electronic pads that stick on your leg and send impulses to the muscle. There’s been a lot of success with this so I’m looking forward to trying it out.

Ps I’m a very old punk myself =;-)

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That is really reassuring to hear! I’ve been getting the butterfly sensation but didn’t know how the hell to describe it…so thank you.

I am awaiting my neurology appointment and have decided to wait after speaking to a close family friend who has MS. She recommended to wait and document EVERYTHING.

The hospital I’ve been sent to only has 2 neurologists and I was considering asking to be referred to their partner hospital who has a better neurology team with designated MS nurses, physios and practitioners but I wouldn’t know how to go about that.

I have at this point accepted that I probably have MS (physical changes in optic nerve but not optic neuritis diagnosis plus all the above symptoms) I just have to be patient (haha) and wait for my appointment (or discuss the option of transferring my referral to the partner hospital)

Thanks! - P

Hi P

You will probably need to have an MRI scan at some point to see if you have any scarring on the brain and spine. This is nothing to worry about. Not sure if you’ve had one before?

This is something the neurologist will take you though. They play a series of loud sounds that sounds a bit like industrial music! I have actually fallen asleep in one once and woke to think I was on a long haul flight going somewhere!

Best to ask your GP to refer you to a team of MS specialists asap as the waiting lists for treatment can be a bit of nightmare at the moment.

This doesn’t mean that you have MS and as I said, I’ve had many years virtually free of any worrying symptoms.

I took about 7 months for me to be diagnosed and when I was I was actually relieved that I wasn’t just imagining it all. MS can feel very strange, almost like some creature is living inside your body and playing constant tricks on you

I wish you well and please don’t be anxious or worry.


I have had an MRI, my ophthalmologist sent me for one of my brain and optic nerve I think. He wasn’t very forthcoming on the results though simply saying ‘there’s no tumours or swelling but I want a second opinion with the neurologist’. So I am waiting to see a neurologist currently but the urgent waiting list is 4 months long.

I’m a bit reluctant to ask to refer that referral else where as I don’t really want to wait longer.

My friend said it took her about 18 months to be diagnosed. And she’s been diagnosed and undiagnosed like 3 times now!

When I posted this I was very scared and worried but now I’m okay. I’ve accepted that this is the new normal for now.

It really does feel like my body’s playing tricks on me or that I’m making it up but I know I’m not :slight_smile:

Totally get this P

If you message your MS Nurse or GP if you have one you can ask if you can be put on the list for any cancellations

I know what you mean by the new normal

I can understand why you’re reluctant to start again as it were with a referral. It can help to remind them from time to time.

If or when you’re diagnosed, you’re probably aware that there are MS groups you can join to meet up and compare notes

all the best P

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I “ignored” symptoms for years because it put them down to being overweight/too much caffeine/run down/single parent problems. I knew deep down something was off but knew I’d get fobbed off due to my weight.

It took a round of diplopia for the medics to take it seriously - even then their first thought was type II diabetes.

I am angry that I could’ve/should’ve been diagnosed years earlier and on meds which hopefully would’ve prevented the eye problems I have now. Whilst the diplopia is gone, they are still weak if that makes sense.

I did actually see a private neurologist once who was able to access my NHS MRIs as he also worked for the NHS. So if you book a private one, it’s worth asking at booking whether they have access to your NHS notes.

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Just incase anyone’s still here for an update. I’m 36 weeks into the ‘urgent’ waiting list and struggling to get in contact with anyone in the neuro department.

Currently having what I would describe as a relapse with the same and some new symptoms (numbness, tingling fingers and toes, lower back pain and spasms and shooting pains in face which I know to be trigeminal neuralgia as I was diagnosed with that and had my wisdom teeth out to try and relieve the pressure on my nerve as they were pressing on it)

I’ve moved house and considering speaking with my new GP to see if there’s anything they can do. In the mean time I’ll be calling neurology everyday until I get an appointment because I need answers!

I’ve very much embraced my new normal and occasionally use a stick to help with my balance and walking.

Hoping 2024 brings answers! - P