Hi, first time poster here but my nerves are getting the better of me so I thought I’d reach out. I’ve been having symptoms continually since April this year, it started with my left arm feeling weaker than usual and slight pins and needles going down them. It continued into my left leg and now I struggle to walk without a limp due to weakness and lack of feeling. I went to my Doctors back in June and they referred me to Neurology as she suspected it might be MS, was told it was a 13 month wait and to go back to the Doctors should my symptoms get worse. They’ve gotten worse so I did and last week was referred to Same Day Emergency Care at the Hospital. I had blood tests done and a CT where they said there were no brain tumours and would try and push Neurology to contact me. The Doctors at the hospital also said it sounds like MS and when I mentioned my maternal great aunt has it they said it was more likely. Neurology called me today saying I needed to be seen urgently and can I come in on Monday, she did say they didn’t find anything in the CT scan and it was based on my conversation with the hospital but my anxiety is through the roof.
Has anyone else had this be their pathway and what should I expect on Monday?
Hi there and no that wasn’t my ‘pathway’ ( mine was optic neuritis when I lost pretty much all vision in my right eye, followed fairly quickly by an MRI scan which found ‘quite a few lesions’ in my brain). So, sorry but I’ve no idea what will happen when you go in on Monday. My guess is a lot of questions and dates for MRI and perhaps a lumbar puncture.
This is a tough time for you, but you need to find out what is the matter and it does sound as though you are making some progress there. Nothing for it but to hang in there and wait for Monday. The chances are it will still be a long road ahead before you get clarity and a plan in place, so try not to pace yourself emotionally if you can but I know that’s not easy. We all have different paths, but I suspect the most of us who have an MS dx have our own equivalent of that strange world of it looking like it might be MS but we don’t know yet. Not a great place to be.
Hi, thank you for your reply, I do have various other symptoms including my eyes/ vision and muscle spasms with my eyes probably being the first symptom but it was a lot to type out. When you went for your first Neurology appointment what did they discuss?
To be honest I can’t remember be. It’s was nearing 19-20 years ago and as is the case for most people undergoing diagnosis that first appointment was something that went by in a bit of a confusing blur- on which point then if you can take someone with you along with a written list of any questions you might have and some paper to write down any key points from the consultant.
Just found this post as also suspected MS and referred to SDEC due to new symptom whilst waiting for my next Neurology appointment in 3 months.
I wanted to message as I feel we need to challenge this normalising that a statement like “theres a 13m waiting list for neurology” is acceptable. It may be true, but sitting waiting for that shouldn’t be an answer for anyone and the repercussions of the wait of your possible condition on your physical health and/or the waiting on your psychological health (also these are linked) is not acceptable for me personally.
Unfortunately, we need to fight fight fight to get our needs met in the NHS unless you’re cancer or clinical emergency. Which means it’s on us to be well informed of our needs. For MS, MRIs in all areas of the spine and brain, with contrast, Lumbar puncture and bloods should be requested. I wonder why sdec didn’t offer a lumber puncture that day (they would have had a major assesment criteria taken care of) and a CT scan is not sufficient. There’s even new MRI sequences specific for ms diagnosis available for MRI head scans that could be queried (I didn’t get these it seems, but they are part of new 2024 diagnostic criteria for ms)
I hope the OP did manage to get the tests and care they needed at this time, and really hope they are not still waiting. I’m putting this here for other to read really.