Waiting for appt

Hi everyone, compqred to a lot of people i have read about i feel silly complaining about wait times.
My symotoms started May 2021, 5 days after 1st covid jab. I was 42 and healthy. I was sitting in house and got what i described as a feeling of electricity from my head to my stocmach. After that i stopped eating, experienced terrible fatigue, developed terrible reflux which i had never had before. I also noticed my eye sight changed and became a full time glasses wearer. I was off work for 2months but all blood tests came back normal, i had a head ct to check for stroke but that was clear. After a couple of months i was only left with tingling headaches but eventually after a few months they disappeared.
Just before Xmas i noticed my eyes becoming strained and had to really focus to see then a few days later on 23/12 i got a feeling in the back bottom of my head and like a wave it came over my head and into my stomach. Sonce then i have had numbness in face and arm on left side and same in right leg but with no weakness. Extreme fatigue, poor apetite, major flare ups of reflux. I felt since then im constantly on phone to GP. Ive had blood tests which were all fine, head ct which is clear. At last appt he asked what i wanted and i said tested for b12 and vit d deficiency and i wanted neuro referral as im worried about MS. He agreed and sent referral. I got call to say blood tests for lyme disease and b12 was normal but there is a problem with vit d.
I called local hospital today to ask about waiting times and because he has put it through as routine refferal the wait time is over a year.
Im so glad that he took me serious and sent referral but after almost 9wks of feeling rubbish with no medication given as they dont know what is wrong with me. I know people wait years for diagnosis and totally understand that people have foot drop etc to get seen. Im scared.

Have you thought about going private for your first consultation? If you get your GP to refer you privately to a local neurologist who also has an NHS list it can save a little bit of time. That’s what I did 20+ years ago and it made sense even then and makes even more sense now. I’m sorry to have to suggest it because it shouldn’t be like that, but there it is.

I contacted a private hospital yesterday. I asked if the results of mri with them would be accepted by my GP and they said they cannot guarantee that and neuro at my hopsital may still require their own tests.
In my head im in no hurry for a diagnosis but on the other hand i dread having another episode.

Ok, if you’ve had the MRI done privately already, then you can surely get it in a format that any of your clinical advisors can look at. I don’t know what that format is, but surely your gp does? For sure, there might be a need for further scans, but no one was hurt by having a scan in the bag already.