Hi everyone,
I woke up with double vision the first sat in Feb and it got progressively worse until Thurs/Fri then got a bit better but is now probs at about 80-85% of normal. I went for an MRI on Wednesday and met with the ophthalmologist today and he said there is inflammation at a nerve in my eye causing the double vision and that the vision should return as the inflammation goes down. He also said there were other lesions scattered about my brain and this is consistent with MS. He said he is going to refer me to a neurologist and get the MS nurses to get in touch with me. He said that only a neurologist can give a formal diagnosis but that it’s not likely to be anything else. I think I’ve mostly made peace with this. When researching I found I have bilateral foot tingles, that Lhermitte’s sign and sometimes an MS hug. I also seem to feel like somethings leaning on my throat when I’m breathing sometimes. I mentally checked out when he was speaking today but my husband asked if anything else could be causing the demyelination and he said yes but unlikely and that he’s not a neurologist so can’t say. So I now find myself in thay limbo between a verbal diagnosis and an actual written one. I’ve found these forums really helpful and know that everyone’s experiences and symptoms are different, but would some of you be able to give me a steer on what to expect next? And if there’s anything I can do in the interim from your experience? I feel a bit lost in life and don’t know what to do while I wait. I obviously know once I have an official diagnosis things will move quicker in terms of meetings and help etc but I’m not sure what happens in this inbetweeny bit. Or if there’s anything I should be doing. Or how to make sure my husband is okay with everything. My family and his family are being dead nice but they’re obviously not going through it or know the feelings so I hope it’s okay I reach out to you for some guidance on navigating this in between period and what to expect next. Thanks so much x
Hello there! Your symptoms do sound MS like, but its best to let the neurologist do his tests and make a diagnosis. There are other things which mimic MS eg NMO also known as Devics disease. It also causes mobility problems as well as eye issues. There is a blood test which diagnoses NMO. There isn’t really anything you could be doing until you see the neuro. MS varies so very much from one person to the next. There are 4 main types ie Benign… Remmitting relapsing… secondary progressive and primary progressive. I have pp spinal ms…another rare type…had it 22 years. but I was in and out of limbo for years…I also felt lost…so I understand you. The MS Society do a lot of literature which explains a lot of things. Have a look at this. Best wishes xxx
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can i just say when you type would you mind if you put paragraphs i find it hard to read block text sorry, i have had optical neuritis and not sure if that is something it left me with lol.
i would just live your life. Nothing you can do for now. DO not get your hopes up for a quick diagnosis. inflammation in the nerve in eye can be down to lupus and lymes and other diseases so really your ophthalmologist should keep stum with his opinions.
I had ON episodes for years even had positive VEP and i still took 10 years to find out i had MS. PPMS.
I just hope your journey is quicker then mine and others who are on here.
but nothing you can do, but well have some fun, make sure you eat well, rest as well and pace, dont get over heated that used to trigger ON for me.
good luck. journeying with possible ms is hard work lol. xxx
PS. to be diagnosed with MS you have to follow the MacDonald criteria. You can find it on the internet.
Never heard of an eye doctor contacting the MS nurse before. after i got diagnosed in 2016 it was my neuro who contacted the MS nurse, who eventually contacted me nearly a year later lol. xxx
Hey guys, thanks so much for responding. I’ve not had anything through from the hospital yet but I don’t think it’ll come next week. He did say they were busy and it’s NHS. All the stuff you’ve said is really helpful. I think that it’s just the waiting I’m struggling with the most and I’m trying to get my head round too many things. I feel sick all day but I think that’s just the stress of it all. What type of things will happen at the neurologist appointment? Would I get a diagnosis then and there? I would imagine they want me to see the MS nurses in the meantime cos they’re pretty sure I have MS or maybe he checked it with a neurologist. He did say that there were other lesions in the brain that caused little to no symptoms. It was like getting a diagnosis from someone who could give me no information. I had a look at the Mac Donald criteria and I would say the fact he said there were other lesions would be enough for a diagnosis? Given that I get tingling in my feet I would think I would probably have lesions on my spine but would they wait to do a full MRI and then diagnose or diagnose based on the head one? Thanks again for chatting me through this, it’s hard to know what I’m coping with when I’ve not actually been given a lot of information from the hospital. And the fact it’s all happened so quickly! Thanks xx