**Symptoms for 8 years, could it be multiple sclerosis?

[nick_feb]

Hi everyone, my name is Nick and I am 28 years old. I am writing because for about 8 years now I have had various symptoms, but I have still not reached a conclusion, and I hope that some of you may be able to help me.

I should mention that at the age of 14 I was hospitalized for what was later diagnosed as migraine with aura. I had a central scotoma for about 30 minutes, which then went away and turned into speech disturbances, followed by a very strong headache that resolved after a few hours. I underwent neurological examinations, an electroencephalogram, and a high-field MRI scan, all of which were normal.

At the beginning of 2018, I started having discomfort in my face, like pressure sensations, and one day while I was reviewing before an exam, I experienced a very strong headache with a very intense peak that resolved quickly. When I left the house, I started having strong sensitivity to light and noticed floaters for the first time. Afterwards, I developed symptoms of visual snow syndrome: ghosting, palinopsia, visual trailing, visual snow, and discomfort when looking at striped or checkered patterns, which seem to move. I had an eye examination and a neurological examination, but according to everyone I was fine. I did not have any significant loss of vision; with glasses I see well, and I have not had any loss of color vision. Sometimes it seems to me that I see very slightly darker with my left eye, but this only happens occasionally.

I remained very frightened by the visual disturbances for a long time, with continuous self-testing, strong anxiety, and fear. I feared, and still fear, multiple sclerosis. In 2020, exhausted by these symptoms, after noticing a dot in the center of the vision of both eyes that lit up if I moved the frame of my glasses in front of it, and fearing it was a scotoma, I had another eye examination with OCT and visual field tests, all normal. I also had another neurological examination, again all normal, and a high-field brain MRI, also normal.

Since 2020, I have sporadically experienced periods of strong tightness in the back of my neck, temples, and face. For a period, I had episodes of tachycardia with sensations of near-fainting at the end and strong fatigue afterwards; according to my doctor, these were panic attacks. I had a further neurological examination in 2023: everything was normal and no follow-up tests were requested.

Recently, I have started to be convinced again that I have this disease. In December, while I was having dinner, I had a moment of mental confusion with trembling in my hand, which resolved within 30 minutes. For the past two weeks, I have had discomfort in the wrist area, not very extensive, which appears when wearing clothes. It feels as if I had a burn, and it is less intense when I wake up.

The visual disturbances have never gone away, and I have convinced myself that I had a not-too-severe optic neuritis that was not detected. Now on Monday I will see the neurologist again, hoping to obtain a cervical spine MRI, since my neck often locks up, in order to complete the picture.

What opinion have you formed? Besides multiple sclerosis, I also fear retrobulbar neuromyelitis optica or MOGAD, but I know they are rarer. I have many plans for the future, and this fear/anxiety is ruining them.

Sorry for the long message. I hope you can give me some opinions. Have a nice day.

[jthatcher]

Hi Nick.

Welcome aboard mate

I’m reluctant to regale you with my initial symptoms and help to fuel your speculation as you seem worried enough already.

The neurologists are good at what they do and, your last MRIs sound hopeful

To help out at your next meeting, it would be a good idea to note down everything that you can remember - what happened and when it happened so that you can give your neurologist as much to work with as possible.

If the vision issue and headaches are worrying/bothering you - private opticians can be very good. You will pay for there tests. They are thorough but not overly expensive. They will probably give you a report with more information for the hospital.

In the meantime time try to stop looking up your symptoms and relax. Your appointment is on the way.

Take care mate

Jon.

[nick_feb]

Thank you very much for the answer, unfortunately I have been really scared and pessimistic for days. It seems impossible to me not to have it."

[jthatcher]

Hi Nick, it’s perfectly natural to feel like that when you don’t yet know what’s going on but you know something isn’t right. Your answers will come in time (search for Limbo land posts on here).

You’re not alone. There’s a nice bunch on here so, chat as much as you’d like to.

For now all you can really do is take care of yourself and stay the course​

All the best mate

Jon.

[Hank_Dogs]

Hell @nick_feb and sorry to hear you are so worried. None of us on this forum are medics so can’t answer your question about your symptoms and MS. All I can say is that based on my experience of both MS (19 years) and of non MS conditions what you are experiencing is nothing like my experience of MS and is much more like the migraines that I’ve had over the years . I had optic neuritis as my first sign of MS and it was nothing like what you describe! I lost just about all vision in my right eye- I couldn’t even detect a bright light from 2-3 feet away! An examination showed very clearly that the optic nerve was very inflamed/ swollen - very obvious . The vision did return but it took weeks and weeks and weeks.

Over the years from when I was a teenager and like many many people without MS I have had migraines including 'non headache ’ ones where I got various zig zag flashes lasting several seconds across my eyesight along with other bright dots etc.

I think that many people , including me , get ‘tension aches’ in their neck .

I understand that you are extremely worried about MS and also that you have had panic attacks. My thoughts are that it might not be advisable to focus on just one possible cause I.e MS at the exclusion of all others so , as @jthatcher says, write down your various symptoms and let the neurologist and GPs work out which of various possible conditions is troubling you.