Last reply 7 months ago
New and in Undiagnosed Limbo

Hi, I’m ShadowFox and I’m new to so I thought I’d introduce myself. I live in Northern Ireland and I’ve been investigating my health problems since 2015. I’m currently undiagnosed.

Long story short, I had a bad concussion 3 years ago which left me with fatigue, headaches, brain fog and a few other symptoms. As time has gone on, the fatigue has stayed (and could even say it has gotten worse) though the other symptoms are mostly gone. But as my GP thought I had post-concussion syndrome, eventually I was sent for a head MRI and cognitive and OT assessment in 2017. My assessments were all fine, though my MRI came back with 3 lesions, so I was referred to a neurologist. Neuro believed that I was asymptomatic so diagnosed Radiologically Isolated Syndrome and scheduled another MRI for August 2018 (a year after the first one.)

A few weeks after that neuro meeting (which was in February ’18), I had my first episode of pins and needles in my hands and feet, with a weird burning sensation on my arm. In the next few months I also had some bladder issues and a couple of bouts of unexplained vertigo. I reported these to my GP in case they were significant, and I was called back to my neurologist and sent for an urgent MRI, this time for head and spine.

I am now awaiting those MRI results and I’m scheduled to meet my neuro next Tues (19th June) to discuss. While initially I doubted that MS would be the cause for my fatigue, the other symptoms have made me reconsider the possibility. At this point I don’t really know what to expect and I guess it has been leaving me pretty stressed, though I don’t like to admit it. In the past week I have started getting blurry grey patches in my vision too which is really unsettling, annd I don’t know yet if all these things are related or not.

To be honest, part of me thinks being diagnosed with MS would be better than no diagnosis. The not-knowing is so frustating, but I know a Dx is only the beginning really. I guess I came here to have somewhere to vent and share my story with people who may understand. I don’t like talking about it much with friends or family because without a diagnosis I feel like I’m being over-dramatic or exaggerating.

The next appointment may give me more of an idea of what’s going on, but to be honest I’m also afraid of what’s to come.

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7 months ago

Hello @shadowfox, well, you really have been through a lot. Everyone on here would agree that being in limbo land is the worst experience so a diagnosis, whatever that might be, will be almost a relief and you can start planning/ treatment. When you go for your appointment, take a concise list of symptoms and rough dates. You should take someone with you too, or maybe ask the neuro if you can record the conversation as there might be a lot to take in. Your symptoms do appear familiar to the world of MS but they can belong to other conditions too. Whatever the outcome, there is lots of support available to you to help you manage a diagnosis. Please take care. Try to enjoy this weekend, as worrying and feeling fearful won’t affect the outcome of a possible diagnosis. Take a deep breath, plan something really nice for yourself this weekend, and please let us know how you get on x

7 months ago

Hi @shadowfox and welcome. Your story is so similar to so many on here.

There’s not a lot that you can do at the moment. Whatever will be, will be! But, you can try and help yourself now. Stress can be a major factor in activating so many conditions, so is best avoided.

I know this isn’t a great time to say avoid stress, but is worrying about the situation actually helping? I think not. So, do whatever is necessary to take your mind off it. You only need to cross bridges when you come to them!

I wish you well with the ongoing investigations.

7 months ago

Hi Shadowfox, you mention that you had concussion badly 3 years ago, those of us with ms are born with it, it can stay dormant and folks live life normally and never know they have got it! But it takes a ‘major trauma ‘ to your body to set it in motion, hence the 60/40 split with women/men cos men don’t get pregnant, but the reason for my story is a lady in her mid 30s a few years ago had a major car accident (whiplash), her ms symptoms started 6 weeks after, the case went to court and she won big time on the payout front, with the help of her neurologists evidence that the whiplash was enough trauma to her body to set the ms in motion. How did you get the concussion? Was it an accident, was it a bad luck, whatever it is has happened and you are left dealing with the consequences, so you are living in the real world but tell your neurologist and he may be able to help😍

7 months ago

Hi, thanks for your replies, they are really appreciated.

@stumbler Thank you for your well-wishes. It’s true that worrying never helps and I am usually the most chill person about things! I think it’s because it’s been a long time getting to this point, and I’m not really talking about my concerns with people because I don’t want them to worry when it may not be MS. I think that if I get more answers on Tuesday I’ll feel I can be more open about how I’m feeling.

@vixen Those are some good tips, thank you. I’ve been tracking all of my strange little episodes since the concussion just so I had something to report to docs if necessary, and it has come in very useful!

@grandma That’s really interesting, I didn’t know it was something you could be born with. My concussion was an accident, I used to train for roller derby and I slid out on a fast turn and fell. I didn’t actually hit my head, I just shook my brain enough to get concussion. Brain injury docs have said the lesions weren’t caused by the accident though, which led to a neuro referral. While I think the concussion was a definite catalyst for whatever is going on now, I can think of times before that accident where I had similar fatigue along with some mental health problems. And this wasn’t even my first concussion! My first was when I was 17 and got dropped on my head in Ju Jitsu. I have learned my lesson, sports are not for me! Thankfully my neurologist knows all this and has it all in her notes for me.

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