Forum

What a difference it makes....

…when the neuro appears to have read your notes and listens to you! I’ve just come back from my neuro appointment and I’m much happier this time around :slight_smile: The last time I was in for 5 minutes, he told me the results of my LP were positive but because there was nothing in my brain he was diagnosing Recurrent Myelitis and his recommended treatment was steroids and azathioprine, appointment over. This time he started the appointment by talking about the bad reaction I had to the LP (better late than never!), then went through my symptoms and investigations to date. I told him my concerns about not having had a scan for so long and he immediately agreed with me and drew up a referral form then and there for a new brain MRI :o He then went on to discuss medication which I found really helpful, he explained the effectiveness of the DMDs and why they may not be the best option for me. He also explained his rationale behind recommending Azathioprine which was great. All in all I came away feeling that he listened to my concerns and was still looking for the best diagnosis and treatment he can. I think I must have caught him on a bad day last time :wink: Lynn x

Hi Lynn Am pleased that you had a good experience this time, makes all the difference. Pam

Well what a difference! Thank heavens for that :slight_smile: Karen x

I’m pleased it went well. I remember saying to you that I would give Azathioprine a try, it really is better than doing nothing at all. Now he’s explained are you going to give it a go ? Jacqui x

I’m not sure yet Jacqui if I’m going to try the Azathioprine :? It completely depresses your immune system and has a cancer risk on long term use. I want to get a job in a hospital and the neuro confirmed yesterday that this is not really an option when taking this medication :frowning: So I have to weigh up the problems with taking it against the potential for long term damage if I don’t take it. I’m going to wait until I’ve had the MRI before I decide, the neuro says that DMDs may be an option depending on the results but at the moment not only would I not qualify but he says all of the trials of DMDs have been done on people with what he called ‘classic’ MS i.e. with numerous brain lesions, and he’s not sure if they would actually work for me anyway…so I’ll need to wait and see! Dizzy - I’m so sorry you had such a terrible experience with your neuro! Hopefully he/she was having a bad day too and you’ll have a better experience next time around :slight_smile: Lynn x

Do you know, thats exactly how me and hubby felt the last time I saw my neuro. he said he had taken a long time to read my notes and said if he was me he would be furious at not having a dx after 13 years. he said how he was going to treat me as a new patient and sort me out a firm dx. Did he do that? Did he chuff! ive heard nothing from him since then ie last Feb!!! Ive chased him 3 times to no avail, so now ive had enough of being treated this way, so I aint gonna bother naymore. Ihave been told I probably have PPMS..so thatll do for me. I really hope your neuro treats you better. luv Pollx