Hi everyone,
I guess I’m kind of hoping for some connections with others in what has been a very anxious time. It seems I might be getting a diagnosis through a different way than others and I was wondering on what people thought.
To cut a long story short, I’m 33 F, and have had various health issues throughout my life. I was born extremely prematurely, this has lead to issues with my vision, lung issues/asthma etc and later issues in my mid 20’s of hip dysplasia. I had 2 pelvic reconstructions to correct this issue.
I requested to see an Opthamologist in late summer ‘24 because of ongoing worsening motion sickness and worsening of my eyes. This then took a year to get an appointment, they noticed some vision loss and nerve damage. I wasn’t concerned at first because they didn’t seem to be. Fast forward to a few more appointments and an MRI scan later, and lesions have been found on my brain. I have been referred directly to an MS specialist.
I’m now questioning everything, the bladder issues I’ve had for years(that I thought were from surgery), my sight issues I’ve had all of my life, I’m always tired and have been for as long as I can remember (I put it down to everything else), I’ve had anxiety and depression from being a child and have suffered from various mental health issues over the years (I put it down to childhood trauma), my brain fog.. (that I put down to undiagnosed ADHD, or just me being me.)
I know they can’t tell when it started but I’m wondering, whether my symptoms more align with RRMS or PMS? I don’t truly understand it all yet… and whether that affects treatment options?
I’m also wondering what kind of things to expect on my first neurologist appointment? Will it be physical exam based, question based or just them informing me of what’s next?
I’d really appreciate any time you could give to answer any of my questions. Many thanks. Millie. 
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Hello Millie, you are having a worrying time and I am sorry that you have had so many health issues to deal with your whole life.
It is very normal for the brain to be in a whirl when someone mentions the possibility of MS. I’m afraid there’s not much for it but to wait for the diagnostic system to play itself out. That is the only way to resolve some of the immediate uncertainties (although of course a diagnosis introduces plenty of new ones).
The one thing I would suggest to you is that you write down what you can call to mind about any neurological-type issues you’ve had and when you’ve had them. Don’t worry too much about what is and what isn’t - just write it all down and let the doctor figure out what is and isn’t important. If it’s pages long, try to summarise it if you can. This might be helpful to the doctor.
I hope that you get some clarity before long about what is going on.
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Hi Alison,
I really appreciate your reply, so thank you so much.
That’s a great idea and I hadn’t thought of that, but I will write everything I can think of down. Thanks again!
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Hi Millie,
Welcome to the forum, we’re a friendly bunch 
As Alison has said, your symptoms might be MS or they might be something else. I was similar to you in that I thought some of my symptoms were down to being autistic and / or perimenopausal.
To be honest, the MS diagnosis didn’t really provide much clarity about those things - yes I get very tired, and have brain fog, and have done for years, but that might be for other reasons than MS. Though I imagine MS has contributed to my fatigue, it’s impossible to unpick what caused what for many of my symptoms.
However an active lesion on my most recent brain scan, and some episodes of itchy skin (with nothing wrong with my skin), were what was enough to diagnose me. I also wonder if the overall picture of my other symptoms that I had attributed to other causes over the years (bladder issues, falling over a bit more than the average person, fatigue etc) also supported diagnosis.
I know it’s hard when everything is up in the air. The uncertainty can be very stressful. I don’t know if it helps, but the health system will inevitably roll in through the process and you will have clarity in the end. It takes a long time. Try to be kind to yourself in the meantime and do things that you love and that nourish you.
Wishing you all the best. Keep us posted (if you want to).
Alison
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Hi Alison,
Thank you so much for the response. I also fall a lot more than the average person, and it’s always been a bit of a joke for me. So I relate to you on that one too.
I guess I’ll know a lot more when I have my appointment with the neurologist. The waiting is tough isn’t it? It’s scary to not know what to expect, It’s so scary knowing I have these lesions on my brain. I feel like no one gets it unless you’re going through it. I’m just expected to keep going, work and be okay? It’s so hard right now. This is one of the hardest things I’ve been through, and I’ve been through a lot. 
Thank you for the advice. I really appreciate it.
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Hi,
It is a really tough time waiting to find out if it’s MS or something else.
You were asking what to expect about the appointment. My experience was that it took a few appointments with neurologists to reach a diagnosis. But everyone’s different. Also, the diagnostic criteria changed recently. They have something called the McDonald criteria, that they use to make the diagnosis - and they were revised recently. So if you look that up online - make sure you’re looking at the recent version - it might give you some idea.
In my case it took several MRI scans and also a lumbar puncture, plus blood tests to rule out other things. They did also give me a neurological exam, which involves testing reflexes etc. - nothing to worry about. My MRI scans also had to go to a neuroradiologist who in turn reports to the neurologist that you actually see. The whole thing takes a while because MS symptoms can be vague, MRIs are not easy to interpret. And they do need to get it right: you don’t want to be taking meds for no reason.
At your appointment, I’d always ask (1) what are the next steps (2) when will this happen (3) how do I get in touch if I need to? Otherwise you can get home to think, well, now what?
Best thing I found to distract me while waiting was aerobic exercise (running, in my case).
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Hi Leonora,
Thank you for the reply, I will definitely write those questions down so that I remember. I’m so nervous. It’s very helpful to know that it will likely take a lot longer to be diagnosed than I think, although the anxiety is killing me; I understand they don’t want to misdiagnose.
I will definitely try to do that too, I’ve been off exercising over the past 4 months due to anxiety/fatigue/work and travel but I think now is the perfect time to get back into a regular routine.
I really appreciate your response too. Everyone has been so helpful, thank you.
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