No diagnosis yet, but worried I have early MS

[jackie62]

Hi, I don’t really know where to begin..

I am concerned I have early MS, but so far no diagnosis. I was diagnosed with fibromyalgia 8 years ago. This affects my joints mainly.

My problems started in early March this year when I began to experience severe head pain in my temples, worse on the left. I had been having vision problems in my right eye for a while which I put down to tired eyes from computer work. I then realised that the pain was in the same places almost every day. I rubbed my right eye thinking I had something stuck in it.

I have a very tender scalp and base of skull, my eyes are painful upon movement, and the pain makes me feel nauseous. I have blurred and misty vision in my right eye, with red colour desaturation. I have lost some peripheral vision in my right eye too. Upon fast eye movements, I have arcs of flashing lights at the outer edges of both eyes. I have some floaters in my right eye.

I have head pain every day, which seems now focused at the front of my forehead, very tender temples, painful tempero mandibular joints, sometimes neuralgia type pain across my cheeks and jaw, dizziness, falling to the left sometimes. I have recently developed a numb area on my left outer thigh, which when scratched gives a pins and needles sensation in my left foot. My right shoulder blade is completely numb and has been for a couple of years now. I seem to now have a permanent sciatic pain in my right hip.

My walking has started to feel weaker and my legs do not feel as strong as they used to. I still try to exercise and keep fit.

I have episodes of severe sweating out of the blue, and at night the bed sometimes gets soaked in sweat and I have to let the bed dry. I can also sometimes go freezing cold. I have developed a very suppressed mood. I’m not depressed, but my personality has changed and family and friends have noticed. I suffer from extreme fatigue, where my energy will suddenly drop like a stone. At these times I also feel extremely unwell and have to completely stop what I am doing.

I have had 2 sets of plain MRI scans of my head and cervical neck. I have spondylosis in my neck. The brain scans found small ischaemic changes which were non specific. I have seen 2 ophthalmologists who did not really help me. My optician referred me urgently to a neuro Opthalmologist due to my right eye issue, but I did not see one. I know I have cataracts forming in both eyes, but optician said they are very mild and are not causing my vision issue.

I am now at the point of going private and am seeing a neurologist next week, because I need answers. I have not worked for almost 3 months as not able to. I am also a part time carer for my Mum.

The more I read about early MS the more I feel I have it, but not knowing and having such a frustrating time trying to find answers is really wearing me out.

When I see the neurologist I want to ask to have more MRI scans of my brain and entire spine with contrast media, to see what could be picked up. I am hoping they will finally be able to help me so I can move forward and plan my life better. And return to work.

Sorry for the very long story, but I am hoping someone here may be able to relate to me and my situation. Thank you.

[alison100]

Crumbs, you have been having a time of it. I can very much see why you’re worried. I’m a bit nonplussed by the uselessness of the ophthalmologists and their failure to follow up and get to the bottom of things flagged by the optometrist. That has not been my experience at all, and I am sorry to hear that your experience has been so unsatisfactory and worrying.

Fingers crossed you’ll make more progress soon. I wish you all the best for finding out what is the matter and what is to be done about it.

[jackie62]

Thank you, I’m really fed up with it all quite honestly, answers seem to be nowhere in sight at the moment.. I’m assuming after my consultation some tests and investigations will begin, so maybe I will start to get somewhere.

I will report back in due course.

[heatherchadwick55]

Hi Jacqui

I am so sorry to hear that you have had a very frustrating time with your diagnosis

I too suffered about three or four years with the optometrist on my eye. I couldn’t see out of my right eye it was like a veil had been put over the front of it. I was given steroids to try and clear it and every time I went to the optician they didn’t have a clue. Anyway, on one visit a consultant came in and he asked me lots of questions. He didn’t say much but he suggested I have an MRI, which I did and it confirmed I had MS.

The neurologist that I saw initially was awful. But thankfully I now have a new one as the original one retired and he is lovely and very sympathetic.

I was diagnosed in 2018 and I do think I am lucky as I have very few symptoms, at the moment. Starting the medication was awful but it does seem to settle down now and I can mostly go about my life normally.

I hope that you manage to get to the bottom of it, it’s terrible that you have to go private or something like this

All the best

Heather

[jackie62]

Hi and thank you.

It’s the not knowing and wondering all the time. This morning I woke up and my face was numb! It recovered on the right but not the left, this is the second time this has happened in days…

I don’t want to go on about this, so I will just say I’ll hope to get some answers next week when I see the neurologist. Thank you for replying x

[jackie62]

Hi, I have just got back from seeing the private neurologist.

After discussing all the symptoms I have been recording since February this year, plus some which are a few years old, he said he thinks it’s severe migraine. I asked if it’s worth doing blood tests or other tests, he said no point. I’m not sure how migraine is making my right eye permanently misty and blurred. The main head pain is on the left. I have many other symptoms. My MRI showed nothing to him, but he said he didn’t have all of the images either. I said can we do them again, plus full spine with media , he said no point.

Anyway, I felt I didn’t really get far. He just tested my reflexes, colour and letter charts which I’ve had done many times now… Im at a loss. Will now wait to speak to my GP when he submits his report.

Anyone ever had the same happen to them? I really don’t know what to do now, other than wait for my GP. Thanks x

[jthatcher]

Hi Jackie. Sorry to hear you’ve had a bit of an anti climax but, a lot of this can be a waiting game. It’s worth still keeping an eye on yourself and making notes while you wait. Mine began a bit odd - brain lesions did cause some vision loss but, when my brain started squashing it’s self things did move along before slowing down again. I’m told that it was a rather complicated Atypical presentation. I wouldn’t wish it on anyone

Take care mate - I wish you well x

Jon.

[jackie62]

Hi Jon and thank you.

I feel I am a very long way off a diagnosis of anything right now… I think I would have felt I got my moneys worth yesterday if the consultant could’ve stopped trying to stifle his yawns.. It was really as if he just went through the motions… No interest in any further investigations. Very disappointed in the whole, overall experience.

Anyway, talking to GP on Monday, and an urgent referral to a neuro ophthalmologist from my optometrist, which somehow got lost somewhere! It actually says I could have had a possible TIA!

Thanks again for all your kind support, take care of yourself x

[briangreens]

While waiting for more tests, I found it helpful to focus on overall wellness events for employees rather than trying to guess the diagnosis. BetterMe has some great ideas about wellness activities, including walking challenges, gentle movement, outdoor time, hydration, mindfulness sessions, and energy-boosting routines that can help support physical and mental well-being during difficult periods. Small daily habits helped me feel more balanced and gave me something positive to focus on.

[jackie62]

I wish I was even that far along, no help in sight so far. Hopefully my neuro ophthalmologist appt will come up soon, it’s difficult to focus when your sight becomes affected.

Thank you for your advice. X

[Artyom]

Hi Jackie, I’ve had almost similar problems to yours.

The first symptom I remember was that sometimes my arm, leg, or chest muscles would twitch, like a heartbeat pulsing under my skin. It wasn’t painful, and it happened occasionally, so I didn’t think much of it. Until one day, while working on my computer, I noticed my right hand had been asleep for a long time. Because of that, I went to an orthopedic doctor, but my problem wasn’t solved. I saw more than 7 or 8 doctors until finally I was diagnosed with Thoracic Outlet Syndrome (TOS) and told I would need surgery.

During that time, the muscle twitching and spasms got worse and became really unbearable. In just 10 seconds, maybe 20 different spots in my body would start twitching, sometimes with pain. A while later, my face became numb—I could move the muscles, but I had no sensation. That improved after some time.

Now my eyes are sensitive to light. When I move my gaze, I feel pain. I have eye floaters, and when there is light in my field of vision, I see it as scattered, as if it was captured with an old mobile camera. This really affects my vision. Imagine driving at night and all the streetlights and car headlights appear heavily blurred and spread out. I feel like these symptoms are gradually getting worse.

I also have severe fatigue. Even if I sleep for 10 hours, I still wake up feeling extremely tired.

When I look at my phone screen, the text sometimes appears double.

I had an MRI, but it didn’t show anything except that I have disc problems in my neck and lower back.

I am really exhausted. My life has been disrupted. I left my university, which I worked very hard to get into, and my family still doesn’t know. I am only 20 years old.

I hope I can get a diagnosis soon and finally understand what disease I have. This uncertainty is the worst part of everything.

I hope you also find out what’s wrong and get better soon. Please comment here if anything happens.

Sorry for my bad English.

[jackie62]

Hello @Artyom

I am so sorry to hear this, I really do feel for you.

It upsets me to think you are so young too, I am 63, so I’ve come a bit further than you in life.

The eyesight issue sounds awful, I have that just in my right eye, small bright lights are totally refracted and are a huge star shape… Blurred and misty.

What you have described sounds very difficult to live with and I am really hoping that you can find some answers too; it is SO frustrating… I wonder if you could reach out to your family, tell them what’s going on, it may be difficult for you to shoulder this alone…

Please let me know how you get on, and your English is great by the way… I really do wish you well xx

[Hank_Dogs]

Hi @jackie62 just wondering, what is your GP’s view? And why have you sort of focused on MS ? I’m no medic but surely there could be a range of possible causes?

[jackie62]

Specific symptoms, particularly vision disturbance in my right eye, now developing a shadow on the periphery. Painful eye movements, pain in my head especially the left temple , cognitive changes, extreme fatigue, forgetful, suppressed mood, weird burning pins and needles in my right foot and painful stabbing pain and numbness in my left thigh. Flashing lights after stabbing pains, General weakness in arms and legs, Very sore scalp, and base of skull… Neurologist said no to further tests, plain MRI scans show no lesions in brain and cervical spine, but a few ischaemic changes, he won’t do a spinal MRI scan of rest despite me asking.

I’m waiting for his report at the moment. GP is referring me back to Opthalmology and neuro ophthalmologist.

[jackie62]

Hi everyone, I have had the report through from my private neurologist. He has diagnosed Functional Neurological Disorder (FND). I had never heard of it. He has also listed migraine, anxiety, fibromyalgia, chronic fatigue and neuralgia paraesthetica. FND was not mentioned to me during my consultation with him.

I’ve been given links to read on FND and I must say a lot of it makes sense, in the absence of brain and cervical spine lesions. But my concern is that he did not have all of the MRI images, and my thoracic and lumbar spine has not been imaged.

My right eye continues to be disrupted, I’ve noticed the actual cornea is now slightly off centre to the right. The cornea seems to move slightly when I look in a mirror too. Head pain is variable and there every day, temples, around eye sockets and under eyebrows by bridge of nose.

My GP is referring me to neuro ophthalmologist after the mess up before, and I am seeing the ophthalmologist I saw last time at the end of July.

It truly is a battle to find answers. FND will have to be accepted for now, but my gut instinct tells me it’s more than this…Thanks for listening x

[alison100]

Well, I suppose that’s progress of a sort. In your shoes I think I would be thinking very much as you are. At least you now have a working diagnosis to digest and think over as you wait to see what further investigations of your eye trouble might reveal.

[Hank_Dogs]

Just wondering what happens now after your diagnosis? Do you get referred to the NHS for treatment which, as I understand it sort of involves retraining the brain?

At lest with FND there is a good chance that it and its symptoms will go away or fade away. I would be celebrating that and researching the various ways of treating it - and getting a referral toNHS as soon as possible!

[jthatcher]

Hi Jackie. I hope you’re managing to handle this heat relatively well.

I have a friend that has Fibro myalgia and FND. She really struggles with it - it doesn’t sound nice at all. She gets fatigue and can have a kind of seizure. She’s had her legs give up and drop her on the floor in shops a couple of times

As already said, at least it’s an answer to try to work forwards from.

I don’t know much about it but, my friend was a bit deflated when she was told that nothing can be done for her FND.

I’ve found Opthalmology to be excellent and very thorough. It was a Corneal consultant that certified me as visually impaired. You may get some answers through that route

Take care mate x

Jon.

[jackie62]

Yes I agree, I am going to talk to my GP again next week and see what medications I now have to take, the neurologist has suggested 2, Nortryptiline and Duloxetene… And then await further appts. Thanks for replying to me x

[jackie62]

I am discussing with my GP next week to find out how we move forward. I may have my thoracic and lumbar spine MRI taken too, just for my own peace of mind. I do have pain in both sections.

At least my GP has actioned some further referrals, and one for Opthalmology is a follow up anyway.

Because the vision in my right eye has deteriorated, it is concerning me. At the moment no one is giving me any answers for this.

Thanks for replying to me. X