i think I may have accidentally deleted my first post last week about terrible communication about symptoms, though things have now moved on slightly (whether that’s good or bad)
background- numbness and tingling down left hand side of body for a week last August, MRI showed a patch of inflammation in spinal cord. Blood tests and cardio tests ruled out enlarged blood vessel/ anything to to with heart.
Over Xmas has another episode with left calf muscle twitching violently then loosing strength and eventually feeling like a dead weight leading to me limping around for a week.
lumbar puncture done in January, which came back positive for O bands in CSF, but not in bloods. Found out these results about 2 weeks ago (so nearly 2 months after I had LP)
Neuro orders another MRI to see if there is any more evidence of inflammation, awaiting that.
last Wednesday get funny pain in eye, went to optician, suspects inflamed optic nerve. Pain gets worse over weekend to unbareable so go to out of hours GP, he also suspects. App at eye clinic at hospital today, optic neurosis confirmed.
does anybody know where this leaves me on the ‘journey’? My neuro was great at first but since lumbar puncture I feel Iv just been left to get on with it, I have still never had any letters about my results, my GP read the results sent to them to me, and then I had to get neuro to phone me about them (2 months after) but still was never given any real diagnosis or plan or what to do next…it’s all a bit confusing!!!
with this optic neurosis am i best to phone his secretary tomorrow and tell her? Do I rely on GP telling him?
how do you work this NHS thing?
I would contact the neuro secretary and explain to them you have just been diagnosed with ON. Point out you have a positive lumber puncture and are awaiting a further MRI. Ask when you can expect that and when you can expect a follow up appointment with the neuro. I would have the same conversation with your GP and ask what support they are going to provide and what the plan of action is. You may need treatment for your ON.
I would also advise you would like to be copied in to all correspondence (kept in the loop about your health) and request a copy of your medical records to date.
The neuro has a protocol to work with. Now with your results i would think your GP would just send you back to neuro on a refferal.
Positive LP does not mean its MS, it just rules it in as a possibility, as believe it or not other diseases show these O Bands lol, yeh its typical.
I would expect the neuro would want now a VEP test done to see how the opitcal neuritis is impacting you. It shows how slow the brain is seeing through the eye.
So early days yet. There has to be a disemmination in time to get a diagnosis of MS, and maybe yours is waiting for more results or something. It does seem odd you havent been called back on the LP results to be honest.
So I would get your GP to shake your neuro awake.
If you have ON you might even be offered steroids. I had it and believe it or not my opticien and GP diagnosed me with DRY EYES lol… the pain was horrendous like a hot poker burning their my eye ball when it moved. It took several years and a VEP test later to find i had ON all along, and oh yes i even went blind as well, still dry eyes.
So all these tests can work for or against you. Mine worked for me in the end with the last VEP test being positive, but my neuro contacted me, although it took 3 months…he apologised and said he has a mounting of medical charts to work through …being an NHS specialist i believe he is only allowed a medical secretary for a few hours, which is simply ludicrous.
So yes kick some bottom …
p.s. I meant to say i expect your neuro is now waiting for you to have the MRI, see the results and if there is any changes before he sees you again.
Thank you, i feel terrible for always chasing everything but at the same time get Sooo frustrated!! With my optic neurosis I went to opticians a week ago, out of hours GP on Sunday, own GP on Monday then the eye clinic at hospital on the Tuesday, all said that there was nothing that they could do for me, I got cocodamol from out of hours GP but that just knocks me out so more like A sleeping tablet than pain relief! My next MRI appointment came through yesderday for next week so fingers crossed that gets things moving. I was thinking that it was almost a dead cert MS diagnosis with the 1st MRI and lumbar puncture and ON, and the other funny leg stuff Aswell. I do have a follow up neuro app that was booked when I was first referred back in November, it’s not til may though so I Suppose I was just thinking because of the positive LP they would bring that forward? I am not very patient!!
Sadly you have to be patient, hey i waited TEN YEARS for my diagnosis lol. I had my last VEP test about 3 months ago and only just got called back to see the neuro, which wasnt until April, so i paid for it and saw him on Monday, and got diagnosed finally.
They dont rush, they dont feel a need too sadly. If it was cancer you would be sorted in a few weeks, but I think with MS IT goes into a pile for appointments.
There is some lass on here in Ireland still waiting for appointment since 20 months eek.
I should think once you have your MRI if you dont have a renwed appointment he will see you in May, thats not long to be honest as not that long ago it was six month waiting list for results.
Just chill for now, if it is MS its not going anywhere lol. I have lived with it for 10 years and i am still going strong hun, albeit well sort of crook lol. xxxxxxxxxxx
Yes you do have to be patient but you also need to be proactive. Its OK to pick up the phone and ask questions. Its OK to ask to be kept in the loop. Its OK to voice your views / needs and ask for a response.
I’m glad your MRI has come through. The results can take a few weeks so it may be you have to be patient and wait for the follow up in May. The neuro will have all the information then. I would make sure your ON is formally reported to the neuro as this is significant.