Hello! Here for some support - a bit of an update!

New diagnosis and before diagnosis
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Hi, I’ve been a bit of a lurker for a while but I’ve decided to take the plunge so to speak! I’m 30 and I’ve got 2 children, married (make that 3 children :wink: ) and two dogs!

I’m a ‘limbo -er’ too, was admitted to hospital back in June with a suspected stroke or torn vessel, which after an MRI turned out to be neither but a white patch, was found in the right side of my brain. I was in for 6 days and had a lumbar puncture, and went home to a life less easier! I have slowly gotten better but I still have symptoms ( I won’t go into loads of detail as I would be here a while with all the strange things going on)! I had 6 weeks off work and I’m still on reduced hours right now as I can’t do my contracted hours .

When I was sent home (or should I say I begged) I was given gabapentin to help with my spasms and burning, prickling etc, they help I think but wow I’ve put some weight on with then, along with the miles I could walk a day I can no longer manage, it’s dented my self esteem a tad.

Anyway, my lumbar puncture was clear, but after speaking to a more specialised neurologist he explained that the size of my patch would not show anything up in the fluid. So it’s either a virus that has ‘gone the wrong way’ as he explained and had crossed and attacked my brain instead of my skin, he used the example of shingles, or it is autoimmune and he said MS. I’m being scheduled for another MRI as my symptoms presenting in hospital were left sided and now I struggle with my right side. It now means patience for me, which isn’t high on my list of being good at!

it could very well make sense it being a virus, I haven’t had the most easiest couple of years now, I don’t want to bore you all but my had a lot of major stress in my home life, things were just starting to move forward and I was due to take on a new role to cover maternity leave at work , I’m struggling to now do my original job :frowning:

My kids are supportive as they can be at their age, my eldest is approaching the dreaded teens young it seems :confused: they already have a lot on with dad, then I get ill so they are a little bewildered poor things. Husband is good too but for reasons I’m not going into I don’t like to rely on him, or get used to it right now.

well that was a lot longer than I wanted it to be and hope you didn’t get too bored reading it :slight_smile:

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Hello, I didn’t see any replies to your message, which is unusual, so I thought I’d say hi. Sorry to hear about how you’re feeling. It can be hard as at times it’s like we are all alone as no one understands. But this forum is here to fill that gap. All of us here are either limbo landers or diagnosed. The helpline on this site is brilliant for when you need to get things off your chest. They can also put you in touch with things in your area that may help.

families find it hard to fully understand at times as they are not going through it,that why I love this site. It’s great to talk to people who understand and have similar experiences.

i hope you get a diagnosis soon. In the meantime, welcome to the forum :slight_smile: xxxxxx

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Hi there - it seems like we started with weirdness at the same time! Not a club I really wanted to be a member of, to be honest with you! It sounds like your neurologist is looking after you, which is great! As for families/freinds/colleagues - I have found that being open about what is going on is by far the best policy - which isn’t a natural talent I have when it comes to things that I think of as personal! Anyway, I just wanted to say hi as another newbie. and wish you all the best with the next steps in treatment. Take care - MonkeyGirl

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I am sorry that you are having such a worrying time. It does sound as though your doctors are being thorough and are keen to help you get to the bottom of things, so that is encouraging. It can be a lonely experience, falling ill when one is a busy young adult with many people relying on her (with good reason - she is a reliable, capable person, and generous with her time!), many legitimate calls on her resources, and very little time for herself even when all is well, let alone when she is ill and could do with some help in shouldering the burden.

Even if help is in short supply, please do grab any that is available, and please do make it clear that help is welcome. People are often shy at offering help to one of life’s copers, being worried that they are interfering, or that their contribution won’t be up to her usual standard and therefore won’t do. The same applies at work as at home - you need to be realistic about what you can cope with at the moment, tempting as it may be to think that you can perform at your usual level if you just try hard enough…

It sounds as though there are a lot of pressures on you at the moment, many of which you can’t do much about. That will be tough enough to deal with. Try not to put any extra, avoidable, pressure on yourself.

I hope that you get to the bottom of your health problems soon and that life gets a bit easier and more comfortable for you.

Good luck with it all.

Alison

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Thank you for your replies:)

Alison, seems you have sussed me out :wink: I dont like to rely on people very much I like to stand on my own two feet so to speak, life experience I guess. I am very lucky to have a very best friend who I’ve known since I was 12, she has recently been diagnosed with a condition which coincidentally both my mum and brother have so we can have a good whine on the phone to each other, we have both seen each other through the good times and bad. I’m a stubborn one and I dont like to be beaten but recently I’ve felt quite down, a feeling of failure and anger that my body has in essence turned on itself and basically I cant take control of it (sounding like a scary control freak now).

Monkeygirl, hope you also get some answers too, it seems like a long journey to a certain diagnosis, whatever it may be the body can do strange things.

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Hi all!

i had a letter through that my neurologist copied me in to my GP. My diagnosis is clinically Isolated syndrome although he does go onto say that he hasn’t ruled out MS and he wants to keep a close eye on me. I’ve got another MRI on Tuesday and a follow up after that.

to be honest just even having this diagnosis is better than having ‘suspected’ all the time and that I haven’t just imagined all the symptoms.

Seeing the problems many are having here getting any diagnosis or health professionals to take them seriously I’m feeling lucky to get this already.

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