I’m currently in diagnosis limbo, I’ve apparently been showing symptoms for a few years but constantly diagnosed with other things, such as fibromyalgia, IBS and general aging issues.
It wasn’t until last year where I lost the sight in my left eye after having a seizure and getting lots of different blood tests and scans that the neurology team said to me that the best explanation is multiple sclerosis.
I’ve been having issues where my legs suddenly drop from under me, particularly my knees for a few years now, but x-rays, and MRIs of my knees have always been clear even though I get pain in my knees when trying to walk. The doctors have now said it’s likely weakness due to MS and that the pain is likely from the way that my knee bends when my muscles give up.
I’ve also lost the reflex ability in my left arm and I’m not sure if that could be due to MS too.
I recently was in hospital as both my legs had collapsed at once and they told me it’s down in my notes that I have MS but my GP said that I don’t have an official diagnosis yet. So I’m a little confused.
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Welcome mate. This Limbo period is certainly not fun. I suppose they’re so careful to get the diagnosis and treatment plan right that it all takes time. My vision also deteriorated on the left side in late 2023. After a few scans I was told benign brain tumor. Then more scans and, a suspicion of MS so, off I went for a brain biopsy. So far, from what I can work out, my diagnoses (Tumefactive demyelination and epilepsy) are symptoms of whatever I’ve got going on so, now It’s the long game. I’m waiting on a letter following last month’s neurology MDT meeting. Because of more recent seizures, they tell me that they’ll be having a Radiology MDT meeting this week and, they’ve booked me in for the next MRI (head and spine) early next month. From their comments and previous letters, I’m pretty sure I know what they’re trying to agree on but, like I say, for now it’s just a waiting game. I suppose all we can do at this stage is look after ourselves as well as possible. Sorry to hear about your mobility issues - I hope you can stay mobile for as long as long as possible.
Good luck and, all the best x
Jon.
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Hi @weallgather17 I can understand what you are feeling confused. As I understand it a diagnosis of MS can only be made by a neurologist after receiving an MRI scan of your brain ( and possibly spinal cord as well) and increasingly a lumbar puncture. The neurologist would order these tests and then meet with you to discuss the results and , if he/she diagnoses MS, talk to you about MS disease modifying drugs.
I’m not totally sure what to suggest but clearly there is a need to clarify the situation. You could go to your GP and recount your experience and ask to be referred to Neurology and an MRI scan and get a proper diagnosis of your condition
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Thank you. I’ve had an MRI and the neurologist wants to talk to me about the results. Unfortunately because I’m a university student I missed the appointment but the GP told me that the neurologist found lesions on my optical nerves during the MRI.
I’ve got an urgent referral back to neurology about the weakness in my legs.
I’m more confused about the fact that in my notes at the hospital it says I have MS but the GP says that I need to see the neurologist again first before I get a full diagnosis.
About the lumbar puncture. I’ve been told by a neurologist that a lumbar puncture is unlikely to be necessary and told by 2 GPs that it might be necessary but they usually don’t do them anymore for MS. So again more confusion…
Hopefully it’ll get sorted soon as the weakness in my legs is pretty much gone now and my eyesight came back (mostly). But I would very much rather get treatment before it happens again or it becomes a permanent issue.
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Hi there. I think it’s important that you do get to an appointment with the Neurologist- and for what it’s worth I would definitely miss a lecture or two or whatever in order to get to the appointment!
Your notes might say MS but until you get an ‘official ‘ diagnosis in writing or in person and have a meeting with the Neurologist to talk about and select an MS disease modifying drug nothing is going to happen. There is a saying that when it comes MS and starting treatment ‘time is brain’ I.e there is a risk that you will get more lesions / damage to your brain and potentially more symptoms/ disability.
from what I know it’s pretty usual that damage ( to your vision, mobility) does recover but not fully. The same happened to my right eye and right leg years and years ago. My walking did recover but not fully and now I find it difficult to walk for more than 10 minutes or less.
Sorry to possibly scare you but the brain isnt able to repair the damage caused by MS and the more lesions you get the more likely that in time the more disabled you will become .
MS treatments these days are good at reducing the number of relapses ( the development of new lesions) but so far no one has discovered how to repair the damage ( loss of myelin round the nerves and damage to the actual nerve).
There seems to be variations in the use of lumbar punctures. Some people get them - I’ve never had one
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