Hello, newbie here, don’t normally do things like this, not on social media etc so please excuse me if I get things wrong. After reading lots of posts on here I felt I could post and not be judged as a hypochondriac!!
My name is Ellie and I have been living with symptoms since before 2009 (told it was CFS, then Fibromyalgia). Anyway after numerous infections since October 2023 I have so many symptoms that it has totally overwhelmed me and asked my GP to do a Neurology referral for possible MS diagnosis. I have lost nearly six stone in weight on purpose since September 23 and really expected my symptoms to get a lot better. That hasn’t happened.
My main symptom at the moment is my left leg does not feel like it belongs to me and has to be woken up to take part in anything I wanted to do. Huge Star Wars fan and liken this to Kylo Ren trying to get his leg to work after damage. 
GP has yet to complete the referral - not sure why it is taking so long, two weeks and counting. So my question is, do I go private for MRI and neurology appointment or wait it out. I can get an Open MRI scan within five days if I go private (and not too pricey either) and a neurologist appointment that is not NHS linked which is why I am a little concerned. I don’t know what type of MRI to book and have tried asking at my GP practice but they are not forthcoming.
I really am unsure about diagnosis as I have had so many diagnosis in the past it just feels like another one to add to the list.
Major symptoms at the moment are spasticity in my left leg, severe brain fog (retyping this ALOT to get the right words, I got an A in English at school and find it very frustrating that my brain is doing this) bowel, bladder, sight problems, skin rashes, fatigue, lack of refreshing sleep. Anxiety and Depression. (the list is huge and annoying)
I am on Amitriptyline at the moment and B12 injections (had those since 2017 - self administered)
Sometimes I can’t see a way forward and my mood drops so low especially if there external stressors. I hope I haven’t gone too crazy with this as it really is outside my comfort zone. (I also thought about leaving all the typos in but I don’t think I would make any sense!)
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Hi Elliev. You say that your GP has yet to complete the referral. I’m not quite sure what you mean by that? Do you know if he/she has made a referral? If he/she has then because of general waiting times in the NHS don’t be surprised if there is a wait- it’s pretty much par for the course. You could ask if you have been referred and then ask what the waiting times are like
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Go see a neurologist that specializes in MS. Many MRI machines don’t have the newest software that many of the neurologists that specialize in MS have. But you do want to do it now and you want to get some kind of diagnosis even if it isn’t MS. But if it is MS you want to get on disease modifying drug ASAP . Good luck:pray:
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If you have sight issues, see an optometrist if you haven’t already. They are very thorough, and if they find something suggestive of disease, that can really kick-start things.
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Thank you for your replies. Yes the GP is going to refer me to Neurology, just has not done it yet. There isn’t a private Neurology consultant that links back to the NHS in my area or the next county, we are very rural. I had my eyesight checked in December and all was good but I have pushed for another check which is getting done on Saturday. Bloods have been taken (loads of them) but feel it will be the same old story - nothing to see here. It is very frustrating. The neurologist wait is currently just over 12 months in my area - I am not going to moan about that - it’s the same for everybody waiting. 
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Had my optician’s appointment and sight has changed - just in 11 months, but I have got extremely dry eyes which I didn’t know about it. They stream all the time and it causes sight issues like blurred vision but I didn’t think that was a thing! Anyway, blinking exercises lol and intensive tears therapy three times a day for a month and then back. Could this mean I am heading in the right direction here, so used to all tests showing nothing. My bloods so far have been okay but on the lower side of all levels, particularly Magnesium. Thank you for all your replies.
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Hi Ellie, i too am waiting for specific ms neurology appointment. I have had an mri scan nhs and awaiting brain scan. I paid privately to see neurologist but he wasnt a specialist in MS so i need to see another. I am new to this, started with pins and needles and tingling, then arm spasms which could i am told indicate ms. I am 46 and female so put other symptoms down to perimenopause but now think might not be.
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Hello Victoria, I did look into going private but had the same problem, no NHS linked consultant so going to wait for my NHS consultant. I have got my date for my MRI and they are going full on in that I am having brain, cervical spine, thoracic spine and lumbar spine. Got the open MRI though so it won’t be too traumatic for me. I hope you manage to ease your pain and that you don’t wait too long to be seen.