Diagnosis - what next

Hi all,

This forum was just so helpful before seeing my Neurologist I thought I would contact you as yet again I am in the dark.

I have been having terrible headaches, was sent for an MRI scan which showed suspected MS. I eventually got to see a Neurologist yesterday who showed me the scan which had lots of white patches over the brain and told me this was one sign of MS. We then went through my history and as I had optic neuritis in 2000 and tingling legs for years he said I had had relapsing remitting MS now for 13 years! Quick on the uptake aren’t I?? He also told me there are new treatments out there but only for new cases of MS.

He gave me this news and went back into his office - I assumed I would then get a chat about how I handle this - didn’t want a hug just some advice. But no, the nurse said that he had another patient and would see me again in another 4 months. I’ve booked an appointment with my GP for tomorrow but just wondered if anyone out there had experienced the same situation.

I’ve got four kids at home and a very panicky husband - any help would be really appreciated.


Sam x

Oh Sam

That sounds bad. The neuro shouldn’t have left you like that. Did you get to have a long talk with an MS Nurse. After I was diagnosed the MS Nurse came straight in as my neuro left the room and we chatted for ages about my worries.

I am sorry about your diagnosis and the bad treatment you seem to have got so far but bare with them. Get in touch with your MS Nurse and ask if you could have an appt with her/him to discuss your concerns. Afterall, that’s what they are paid for.

And remember you will get lots of support from us.

Take care

Shazzie xx

Sod him. You’ve got to 13 years in without his ‘help’. We’re all loads nicer zx

Hi, and yep, I was left with a “see you in a year” after being told I probably had PPMS at the beginning of July! It seems that there is a lot of legwork we have to do ourselves :wink:

Like you, I wasn’t too quick on the uptake, I was still teaching in the gym in March this year and whilst taking a “few weeks off” to wait for a neurology appointment (I thought I had a trapped nerve!) and I was diagnosed with suspected MS in April.

I blamed a foot injury for problems walking, eyesite failing a bit for vertigo, tension for the funny tingly and numb bits etc. so I understand that it can be a bit of a shock.

Get hold of the MS nurses at your hospital, they will give you loads of advice and help etc. Mine gave me details of a charity that could help with my PIP application (which you need to look at) and chased my physio up for me. I didn’t actually see the point in arranging an appointment with my circumstances but that might be helpful for you.

Sonia x

Hi Sam, It isn’t right for you to be left in limbo. I had a bad first attack in 2009 and was diagnosed via lumbar puncture which I had done privately. After another relapse soon after I was put onto a DMD as I met the criteria for treatment. I was also told I had probably had a mild form of MS for years based on the scans. Your MS nurse will probably be able to confirm that if you have another attack in the next 12 months you should be offered treatment (ie; drugs) if you want them. Bad headaches was one of my first symptoms too and perhaps it is a sign that our MS has progressed. My best to you during this difficult time. Peter

I was treated similar to you at first. I now have ms nurses two in fact and a decent physio who knows exactly who to put me in touch with should I have any queries.

Try ringing your neuro department and find out if there are ms nurses in post, if not ask for talking therapy or get further advice from your gp. If your gp isnt geared up to deal with ms ask him/her to read up and let you know what they can offer you in the way of treatment/advice.

My gp didnt have a clue at first so he promised to read up and then had me down for a chat. I can now ring him and get prescriptions over the phone because he knows Im not always well enough to attend.

Its rotten the way some are being treated, especially you. Its as if you can deal with such abruptness whereas you need some understanding and sympathy, plus practical advice. Also find out if you have a local support network, like ms local branch or any meetings in the area, theyre a great source of help and support.

Best wishes