Hi my daughter she’s 20 had optic neuritis in May and was kept in hospital for 5 days
She had 2 MRIs and a lumber puncture whilst in hospital they found lesions on the brain and the optic nerve
They said she would get results of the lumber puncture within 2 weeks it’s now been 5 weeks and we’ve heard nothing
We called the ward and they said an appt has been arranged for the end of August where they’ll discuss results
Is that the norm for waiting so long and why were we told 2 weeks?
It’s so frustrating
Thanks for reading and any info would be appreciated x
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Hi there . I don’t know what current waiting times are like and I expect they vary from hospital to hospital. I do remember that when I was diagnosed around 19 years ago I got really frustrated at the wait and got a bit stroppy with the unit.
I too had optic neuritis and as I say to all those waiting for a diagnosis or newly diagnosed, 19 years later I’m not doing too bad . Struggle with walking sometimes and experience ‘bladder urgency’ but other wise generally OK . Treatments these days are a lot better than the one I was put on 19 years ago.
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Hi @marionfunnell, so sorry you and your daughter are going through this. Really unpleasant - makes complete sense that you’re feeling worried and uncertain.
Like Hank_Dogs mentioned, think waiting times and process vary from hospital to hospital.
Does your daughter know about My Chart, and/or have an online portal with patient information? Please ignore me if you’re already aware of this, but thought I’d mention since I wasn’t in the early stages. I received the results for my lumbar puncture via myChart rather than a letter (after approx. 2 weeks), which is helpful for me because I prefer processing big news prior to appointments. Not sure how this works for every hospital etc though, and can be much more impersonal and harder to decode vs. having a medical professional in front of you.
When I’ve been uncertain recently, I’ve given the neurological secretaries a call (it sounds like you might have done already, but just in case ‘the ward’ is a different thing!). I got their number after calling the main hospital switchboard and asking for their contact specifically since I believe these are people who organise and consult the neurologists specifically the most.
Hope you’re both holding up as best as you can at the moment. It sounds like it’s been an incredibly unpleasant and uncertain time for you, so really wishing you all the best and hope you do get your results as soon as possible.
Hi @mackenzieblackman @Hank_Dogs
Thank you both for your replies
I think it’s because it’s all new and her symptoms were so sudden it’s just made us feel quite vulnerable as we don’t know a lot about MS
We’ve spoken to someone on the ward she was staying on and they’ve said her lumber puncture results are not back yet but an appt has been arranged for the end of August so I assume it’s just a waiting game now like I’m sure a lot of people are in the same boat as us
I must admit though when she was in hospital they were really good and did all the necessary tests so at least she’s not got to wait to have any of them done and they’ve said any symptoms in the meantime go straight back to the ward rather than going to the GP so we’re thankful for that
I will be updating here and it’s helpful reading other people’s stories and being able to relate to symptoms that she’s having xx
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Hi @marionfunnell, must be such a strange and surreal time. Really glad your daughter has already had a lot of scans/medical support and you’ve had a positive experience with the ward! I’ve also been really impressed with the NHS during my diagnosis process (which I know isn’t the case for everyone).
I’ve also felt the same reassurance reading through posts on the forums - helps me feel much less alone, super useful to read about similar experiences.
Take care - will be thinking of you and wishing all the best for you both in the next few months. Go do something nice for yourself today, even if that’s just an extra nice cup of coffee or a walk in the sun!! She’s very lucky to have a mum who is looking out for her. Make sure to take good care of yourself too at the moment since it must be a real shock and a lot to digest x
Yes indeed there is a lot to learn. I spent ages looking through the websites of the MS Society and MS Trust. I e attached a link to a site developed by Professor Gavin Giovanonni who is something of a key researcher into MS and also a consultant. The MS Society and MS Trust tend to report on the ‘ established’ understandings whereas the Professor highlights developing knowledge, understanding and treatments. Some of his stuff is fairly complex but e.g he does highlight that some of the newest treatments are getting near to stopping the MS. It’s worth reading his stuff and you can sign up to posts on the latest thinking and his answers to some questions from MS patients.
As mentioned in my earlier comment I’m on one of the early treatments ( one of the first three I think) and the newer ones are a lot more effective. It’s definitely worth you and your daughter spending time familiarising yourselves with the range of treatments and the pros and cons of each. The newer ones are more effective but have some side effects ( all treatments carry some side effects but those of the newer ones can be a bit more significant).
My advice is also to look at advice on things your daughter can do herself - the general advice is on diet and exercise. ( ignore any suggestions that special foods, diets etc can ‘cure’ MS ! A few too many ‘quack’ suggestions on the web). In general I follow the general guide that in terms of diet, lifestyle etc ‘what’s good for the heart is good for the brain’. I also look at the web site of ‘Overcoming MS ( living well with MS) which also makes suggestions on diet , exercise, reducing stress through mindfulness and meditation.
All the best to you and your daughter
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