First time poster here! Please be patient with me as I try to navigate my way around the forums!
So, I was diagnosed in early March (although they didn’t tell me until 4th May!) and since it was the ophthalmologist who diagnosed me, she referred me to neurology where it can be investigated further and I know what will be happening.
The reason why she diagnosed me is bc I had optic neuritis (for the 2nd time in 10 yrs) so she had also already sent me for a head MRI. The results were ‘brain full of white matter’ and I still don’t have an appointment with neurology thru! It’s now coming up to 6 months of waiting & I’ve tried phoning g neurology but no one ever answers the damn phone! I have tried to stay off the web bc I’d only end up convincing myself it’s the worst type of MS! (Y’know, google headache and you have a brain tumour!)
How long did you all have to wait to see the neurologist? Should I be creating a fuss about this? What do I do? I’m SO stressed out about this!
Also, what does white matter mean? Does every MS person have it too?
I’m at my wits end with all this. I can’t believe I have MS….
Sorry for the long post… I don’t have anyone to talk to bc I don’t want my family to worry(they know about the MS but not how Im worrying about it).
Please help if you can, Im having such a hard time dealing with this.
I am sorry that the system is treating you so poorly. All I can suggest is keeping on at the consultant’s secretary. Or going private.
We had US friends here recently, and they listened with fascinated horror at the home-based stories of NHS waiting lists. They can’t imagine why we put up with it, and I’m sure we all wonder sometimes.
Keep hassling them. I was told in nov 22 that they thought it might be MS, diagnosis. I went for a LP in jun22 & fairly sure they forgot about me until I started ringing neurologists secretary. I was told that they had to send myLP results to another hospital hence the delay, but funnily enough neurologist rang the next day with results. Final diagnosis came in june 23. The whole process has taken about 2-3 years when I actually got a GP to take me seriously
Hi Cali, I was also given an initial diagnosis by a hospital ophthalmologist after I went in with optic neuritis. This was 17 years ago so I can’t remember exactly how long I had to wait but I do remember feeling impatient and frustrated. Are you able to go back to the ophthalmologist and ask if they have heard anything or if they could chase up?
I think, but don’t know for sure that ‘white matter’ might refer to lesions , I was told by the ophthalmologist that I had a lot of lesions which I think (?) show up white on MRI scans.
If it’s any consolation then: I lost pretty much all vision in my right eye but it slowly recovered back to more or less full vision. After MS diagnosis I was really scared and feared the worst - expecting to wake up any morning unable to walk or something like that. When I saw the MS neurologist he assured me MS didn’t work like that and put me on a ‘Disease Modifying Drug (Avonex)’. For some 3-5 years after that and other than the weekly injections, I sort of forgot I had MS until one day, walking around town, I found my right leg got very tired and a little difficult to move. ( it recovered after about an hours rest). Fast forward 16-17 years and I’m now nearly 70. My right leg sort of gives up after 20 or so minutes of walking and sometimes I do get periods of MS Fatigue ( just don’t have any energy). Overall though I’m not too bad. Off out today to mow the lawn and then try a bit of hedge cutting
I have had the same issue. My symptoms started nearly 30 years ago and i was fobbed off with “inner ear virus” until four or five years later I was asked to take a medical for some life insurance, and my GP informed me that I had possible MS. I was referred to an MS clinic but, as i didnt have any symptoms, i only went for the first two appointments and asked to be removed from the clinic list.
Only now have my symptoms returned with a vengeance but it took 9 months to get a diagnosis from my neurologist.
You have to keep calling neurology, or the medical secretary for neurology, until you get a result. I made a bit of a nuisance of myself but i think it helped speed up the process. Its so frustrating when you’re just waiting.
Thank you all for your replies… I must say, the longer the time I spend as a patient of the NHS, the worse it seems to get… I was first diagnosed with a paediatric cancer called rhabdomyosarcoma when I was only 3 months old. I’ve had 6 organs removed over the years, byt thankfully, eyes weren’t one (or two!) of them! My eyesight actually got better on it’s own after the optic neuritis I had in Jan/Feb without any steroidal treatment. However, my overall eyesight got worse. Before, I was short sighted but now I’m long sighted and tbh, I think there’s some minor short sight now. But can I afford to buy new glasses? Nope! I had hoped I would get a summer neurology appt bc I’m a primary teacher but I’ve had to go on supply because I’m just not well enough now to teach full time. However, this means that whenever I have to have time off for a health related issue, I don’t get paid!!!
I have a urologist, a neurologist, an oncologist and a gastroenterologist. I’m currently awaiting my billionth surgery but I have been waiting for over 2 years now - and they’re still using the pandemic as an excuse!
But I did take your advice and kept ringing the neurology secretary but with the bank holiday weekend, I had to put it on hold but if she doesn’t ring me back by lunch tomorrow, I’ll be ringing her until she answers her phone! (her current voicemail says, ‘don’t leave me a message, I won’t listen to it.’ WTF???
I already have the extreme tiredness, numbness in my feet and fingers, woven in with tingling, plus shakiness of my hands (pointed out to me by my nail lady who’s been doing my nails since 2014! My GP got a letter from the ophthalmologist with details of why she has diagnosed me with MS and I was sent a copy too. Unfortunately, she is based at my local hospital, and all my care is at the main hospital in the city I live in but neurology is based at at another hospital miiiiiles away from me!!!
So I’ll be up at the crack of dawn tomorrow so that I can start ringing the neurology secretary and can hassle the appropriate person for my next surgery!
Thank you for reading the inner ramblings of my damaged brain; sorry to have taken up your time. I’m very grateful for you all x
2 year waiting list for surgery on my throat? My word! I don’t know how my employer will react to me waiting that long to return.
I too am a multiple hospital department patient: neurology, heamatology and endocrinology; fortunately they’re all within the same NHS trust.
Best regards,
JP
I am on the urgent neurology waiting list and I have been advised it a 18 month waiting list. Maybe less or more depending on your area. I have had my mri but been advised that that is a 3 month wait for results. I hope you get some info soon