Hi all, I’m new here and glad to have somewhere to talk about this!
I don’t have a diagnosis, but have been back and forward to my GP for the last two years, and have finally been referred for a brain scan. I have a lot of weird symptoms that lead me to suspect I have MS, and my maternal Granny had it so I’m quite aware of the broad spectrum of MS diagnoses and symptoms folks can have.
I started off with pain in my left leg which flared up for a while then settled down again. This progressed over time to pain in both legs, arms, feet, hands, back, torso and jaw. I also have numbness across different areas of my body and face, a tingling feeling, a weird sensation that feels like ants crawling on my body, extreme fatigue (even if I’ve slept for 12 hours), weakness, poor concentration, clumsiness, visual disturbance like a migraine (sometimes accompanied by headache), trips and falls, sometimes slurred speech… it’s all intermittent and not all at the same time but its getting more frequent that I’m having “attacks” and they’re getting more severe.
I’m 25 and just really worried. It would be a relief to get a diagnosis (MS or otherwise) but it’s also quite a scary prospect.
Thanks for the space to talk, and any advice on how to advocate for myself would be greatly appreciated, I don’t feel I’m being taken very seriously!
Good luck Jenna,
I knew what it’s like, I’ve just received my Dx after going back and forth with all sorts of problems. I started thinking that maybe I was just going mad!
You have your scan coming up so that’s a positive, things are moving.
All best
Hang in there jenna97, and don’t stand for any nonsense. An MS dx can take a long time, though some are dx pretty fast, depends on the results of MRI’s etc.
And if the dx is MS? There are way more drugs and therapies available now to deal with it, and more still in the pipeline.
In the meantime, I assume you have had blood tests to determine if you have any vitamin deficiencies, tropical diseases, infections etc. If not, then back to the GP to get those done pronto. B12 deficiency can cause a lot of the symptoms you describe; Vit D deficiency can cause quite a few as well.
Is there an MS Centre with oxygen therapy (that will accept people without MS diagnosis) near you? It might be worth trying oxygen therapy as it may alleviate some of the symptoms you are having. Our centres | Multiple Sclerosis National Therapy Centres
I have indeed had what feels like hundreds of blood tests! Every possible deficiency or diease which can be picked up through blood tests has been ruled out. I also had an ultrasound on my liver as one of the blood tests for that was a bit off, but that’s resolved now too and there was nothing of note. I wouldn’t be at all surprised if I do have MS.
I’m not sure about oxygen therapy near me, but I will certainly do some research! Thank you for the recommendation.
Update - I’m now not getting a scan. Radiology wrote back to my GP after he referred me to say they won’t accept a referral for me unless it comes from a specialist. So now I’m on the waiting list for a Neurology appointment instead.
I’ve been keeping a daily record of my symptoms, as well as a bullet pointed list of all the symptoms I’ve had to date. Is there anything else I could do to prepare? The waiting time is an average of 11 weeks where I am, so I want to make the most of it when I do get to see someone.
Further update - been told the routine waiting list is 39 weeks. Deducting the time I’ve already been waiting, that would take me up to January next year!!! My GP has finally said explicitly to me that the referral to Neurology is for possible demyelination and he doesn’t know why I’m just on the routine list and not higher priority. The anxiety and stress is real.
I feel this so much. I’m the same age and similar position to you. Similar symptoms too!. Started back in march and i ended up in a&e who referred me to moorfields for my vision problems. Originally they didn’t find anything but i was persistent and he sent me for an MRI which he wasn’t very forth coming on the results with ‘theres no swelling or tumours but you need to see a neurologist for a second opinion’ like what? The urgent wait list is 4 months long as of this week. The neuro booking office literally told me ’ we’ll see you in october’ and said to go back to my gp if i want to speed up the process. My gp laughed in my face this morning when i told her what the hospital told me.
You’ll get there! Be persistent and make sure they listen to you!
I on the other hand am currently researching private neurologists as I am lucky enough to have family who are able to cover those costs for now.
I’m so sorry you’re in a similar position! It absolutely sucks. Its so unhelpful when you just get basically told you just have to wait forevermore to get seen!
So glad you’ve got the resources to possibly seek private help, I hope you can be seen really soon that way! Unfortunately that’s not an option for me, so will just need to keep on at them for now. Might end up needing to present at A&E, which is less than ideal, but there’s no real alternative when you’re not under a specialist already. Wishing you well with your journey
It does suck but It’s nice to know that I’m not alone! The waiting times are ridiculous and that they deem 4 months suitable for an urgent referral with progressing symptoms?
I am very lucky to have that as an option and I hope I can be seen soon. I’ve made some enquiries so i have everything crossed.
If you do present at A&E make sure that you are fully understood. I’ve been twice, first time suspected optic neuritis, second time they suspected a stroke because they hadn’t fully understood me. Hopefully presenting to A&E might help progress things but if not you at least have a documentation of your symptoms (make sure you ask for a discharge letter and keep it safe)
It is definitely really good to have people who understand!
I hope you don’t have to wait the 4 months, I’m really hoping I don’t have to wait until January if I can either get a cancellation or bumped up to urgent. I’m not sure how urgent can be a waiting time of 4 months though!
That’s definitely really sensible advice, thank you. If I ever do feel the need to go to A&E, I will make sure I’m as clear as possible about my symptoms and make sure I get something in writing!
I feel your pain with the waiting game of finally seeing a neurologist.
I got an urgent referral to see a neurologist in September 22. I then got a letter saying my referral was under review and I couldn’t chase for 3 months. Luckily, my referral went through and I had my first appointment in April 2023.
My appointment didn’t go as expected. Even though my symptoms had apparently been reviewed and my GP agreed my symptoms were neruological, I was told my symptoms were normal and referred back to my GP.
Luckily to ‘put my mind at rest’ I was sent for a brain mri anyway which showed inflammation and lesions consistent with MS so I am now back with neurology.
The best advice I can give is to advocate for yourself and make sure you are heard. I really struggled with this, i’m not sure if they would have even referred me for the MRI if I hadn’t cried during the appointment out of sheer frustration of knowing something was up and being sent back to the GP knowing getting another referral to neurology would be twice as hard.
I’m hoping you’re experience is better but regardless, i’d try and stand your ground with getting an MRI. X
Oh that’s chronic, I’m so sorry you had such a stressful experience! Its so hard when you know something isn’t right and it feels like nobody is listening. Its your body at the end of the day and you know what is and isn’t normal for you! I think so many people must feel like they’re just being seen as hysterical and not taken seriously.
I’m really glad you were able to push for that MRI so you could start to get the answers you need. Self-advocacy is so important, although it really shouldn’t have to be that way.
Well done for digging your heels in, and sometimes I think being emotional in an appointment is the only way for them to see how its really affecting you, when there’s often nothing visible to see. Crying is no bad thing, I know I’ve ended up in tears quite a few times with my GP, I’m lucky he’s always kind to me!
Thank you for sharing your story and good luck with your next steps x
Good news, yesterday I called the hospital appointments office to ask about cancellation appointments as I’ve been doing every week since my GP told me to. As luck would have it, I’ve finally been given a clinic appointment to see a Neurologist on 30th August. So nervous again now I have a date, but its good to be able to look forward now to hopefully getting some answers soon!
its 30th of August which is a Wednesday I think!