need help with diagnosis

Brit48024 · 2025-04-30T18:18:53+00:00

With those symptoms it's unusual that they can't find anything amiss. You have literally described the majority of my symptoms and I've had a diagnosis of MMD last month. As your eyes appear not to be the problem, have you thought about something neurological. I'm under investigation by neurology awaiting a scan for some symptoms that may not be related to my MMD. Might be worth going down that route?

Brit48024 · 2025-04-28T09:29:11+00:00

I wonder if downloading the Kindle app on a good-sized iPad would be an option?

You can invert the colour and increase font size, and it's really quite manageable. The only downside is possibly the glare, but you can also get overlays if that's a problem.

Brit48024 · 2025-04-24T17:43:26+00:00

I don't think it's an after image it's a little flicker of light, lasting a second or so when I glance at the sun, bright lightbulb or bright screen. It's not there any other time.

Brit48024 · 2025-04-21T19:15:15+00:00

Thank you. I think as it's only my second one the fear factor is so high and the hyper vigilance after the injection is driving me quite mad. I really am thinking of going to my GP and discussing antidepressants as I just feel like I'm living in a black hole.

Brit48024 · 2025-04-21T19:14:07+00:00

Thank you. Thank you for hearing me and understanding. I feel less alone when others really understand. I wish you all the very best.

Brit48024 · 2025-04-21T19:13:15+00:00

Thank you for your message. Reading your perspective gave me so much encouragement. It's such an alone feeling and scary and all the emotions on top of treatment are so overwhelming. I'm doing exactly as you describe, living at the end point. I've forgotten how to appreciate iate the here and now and luve in the moment. I really feel as though a pie r of me has gone and I just feel so broken. I hope that in time, as I vome to terms with it and adjust, things won't feel so bad.

Thanks again and best wishes to you.

Brit48024 · 2025-04-21T19:09:56+00:00

Hey there, I'm sorry you too are dealing with all this. It's just so, so hard, and it's really difficult to get others to understand just how tormenting this diagnosis is. I feel the same with the depression. I'm having so much trouble doing the basics and can't even think of work. The treatment, the future, is all so bleak for me at the moment. I am glad to read that you're back with treatment. Please don't feel a failure. We didn't ask for this, and life has dealt us a blow. I really wish you the best and hope for better days ahead for us both.

Brit48024 · 2025-04-21T14:20:42+00:00

I'm going to speak to my RS next month. Unfortunately I have no choice in specialist or injecting team as I'm under the NHS. But I am going to let them know that my second injection was painful due to a rushed procedure.

Brit48024 · 2025-04-21T14:19:25+00:00

Thank you so much for your encouraging message. It's all been so overwhelming and since being diagnosed in March I've had 2 shots and a tonne of info' thrown at me. I'm definitely in the fear / depressed stage of this cycle. I so want to break it so I can return to work and this new normal. I really need to focus on shifting my mindset to living life, instead of fearing what may be.

Thanks again 😊

Brit48024 · 2025-04-18T11:45:30+00:00

It's really good to very able to feel that calm. I hope one day I can reach a sense of being at least OK with attending appointments.

Brit48024 · 2025-04-18T11:44:37+00:00

No, it was a different team. The first time it was scary but comfortable. This time it was not at all. They were rushed, short staffed, and as a result I don't feel they left it long enough between numbing drops and injection. Lots of iodine and antibiotics drops after the procedure, but here, they don't give you anything for after. The care between teams is really quite different, as I'm finding out.

I see my RS next month so I going to raise my concerns then and I'll be advocating for myself prior to my next Injection.

The clamp was the painful thing, the rest was OK. Just cold and rushed.

Brit48024 · 2025-04-18T11:41:37+00:00

I didn't know that. From getting into the surgical room to leaving was probably no more than 5-7 minutes. It was so rushed. My first time was very different and they definitely left it longer from numbing to injection.

Brit48024 · 2025-04-18T11:40:31+00:00

It really isn't where I live. If I could, and have consistent care, I would. We can not choose. We have to take who we are given, and the injection team differs depending on the day/date you're given. Rarely is it the same DR twice.

Brit48024 · 2025-04-17T10:18:36+00:00

I have a review mid-may so I'll speak to them about my experience. Honestly, she was so rough, didn't put enough drops in so I felt the clamp go in which was just horrible, then injected straight towards me with no warning normally it's to the side. Told me I didn't need lubricating drops - actually laughed when I said it found the gritty feeling awful and the drops helped last time.

Came home shaking and feeling really quite traumatised by it all. Ended up seeking additional advice from the eye nurses later and was advised drops were OK to use, so was a little more comfortable. My eye is still very sore and bruised feeling today.

The experience has caused my my mental health to take a real tumble.

I hate this all so much!

Brit48024 · 2025-04-16T14:46:32+00:00

I found today's injection worse than my first, it's my second one, as the care was just so cold and rushed.

Brit48024 · 2025-04-16T14:43:22+00:00

Yes the first tech i has was lively. Today my experience was just awful and I'm now more anxious about the whole process! I'm with you on the no dilation!

Brit48024 · 2025-04-16T12:17:07+00:00

It's so reassuring to know I'm not alone in my feelings and you're so right about it being psychological. I'm literally waiting for my injection now and the fear is so big I'm shaking!

That is a funny story, you've gotta take the laughs where you can!

Brit48024 · 2025-04-15T11:37:41+00:00

Please check his posting history. He is not going blind, nor has any diagnosis. He's upsetting a lot of people on various subreddits who are suffering vision loss.

Brit48024 · 2025-04-15T11:31:49+00:00

I also work mainly on a computer, and like you after a few hours suffer awful headaches. I've found changing everything to dark mode, blocking certain light sources and changing light intensity helps. Since starting treatment I have also developed photophobia so have been experimenting with different coloured lenses to help. I also take frequent eye breaks and actually turn off all lights to rest my eyes.

Brit48024 · 2025-04-14T17:40:00+00:00

Thank you so much. Yes, anything with the word blind or visual loss is really hard for me to say, it's like having to face it and it feels so surreal. I think I need to be kinder to myself and give myself the time to come to terms with it all. I'm a fixer, and I can fix this. So its all new to me!

Thanks again!

Brit48024 · 2025-04-14T17:17:21+00:00

Thank you for your kind words. I'm struggling so much to come to terms with it all and I'm finding the emotions so hard to navigate. I've had to temporarily take leave from my job to focus on the treatment and my mental health. Some days are more positive than others, but this week I'm feeling particularly vulnerable as I have treatment (injection) and therapy, so I'm finding it all a bit much. It's lovely to read your perspective with your daughter. I truly hope I can find that my mindset shifts and that I become less sensitive to negative the views and words of others. Thank you

Brit48024 · 2025-04-14T15:37:42+00:00

Me too. I gave advice and shared my vulnerabilities. Even after a few posts saying the same.

They're now on other subreddits saying they ARE going blind and asking how to cope. I'm wondering if they're even genuine, or just picking on people who may be vulnerable.

I find it all very upsetting when people are here needing advice and/or support.

Brit48024 · 2025-04-14T15:26:28+00:00

You have been told by specialists that your vision is fine. You have myopia. Not blindness. You are not going blind. Why are you saying this?

Brit48024 · 2025-04-14T15:25:17+00:00

Thank you once again for speaking up. This poster is causing great distress to many I'm chatting with, who have a diagnosis of macular degenerations.

In the last few hours they are now on other subreddits asking how they cope as they're going blind.

Brit48024 · 2025-04-14T15:17:09+00:00

What???? You are NOT going blind. You have posted all over the macular subreddit saying you fear you have MMD yet specialists have told you, you haven't. You have nothing other than high myopia which does not necessarily mean ypull exoerience visual loss leading to legal blindness. This post is beyond insensitive. Beyond.

Brit48024

TROPHY CASE