Hi,
After two and a half years of ongoing MRI scans of the brain and cervical spine, I was diagnosed with Relapsing MS earlier this month, as the last MRI I had showed a new lesion on my cervical spine, so I now have lesions on my brain and one on my spine.
The most recent attack prior to diagnosis petrified me and my partner, as it rendered me unable to walk for 3 days, thankfully I am up walking again now and back at work, although I still have weakness in my legs and fatigue.
I am waiting to hear from the MS Nurse, it has been 3 weeks now. I feel quite lost and would really like to speak to the Nurse to discuss what happens next. Can anybody advise me how I can speed the process up, as I have tried calling the Consultant Secretary, but found it difficult to get hold of her?
many thanks for reading.
Jamie
Hi Jamie
that does seem a while to wait. Have you tried asking the hospital to put you through directly yo the MS nurse? It may be better if you speak to her directly to voice your worries and that might speed it along
Julia x
1 Like
Hi Jamie
The process tends to be different depending on your location (the dreaded ‘postcode lottery’).
In my area, West Sussex, we have a community neurological team. If necessary, I can contact them to get in touch with the MS nurse. Sadly, my MS nurse died a few months ago and while I think she’s now been replaced, it’s taking a while for her replacement to come up to speed with the sheer volume of patients, let alone the various groups she had started and the inevitable meetings. I’m not in need of assistance as I’ve been diagnosed long ago and am comfortable with where I am without MS nurse assistance.
I assume you are waiting for an appointment with the neurologist in order to discuss your options for a DMD. This is an area where it’s helpful to run through the options with an MS nurse, but you can start by looking at the various types available. Have a look at the decision aid tool on the MS Trust website: MS Decisions | MS Trust
In terms of getting an appointment with your neurologist, try phoning your hospitals appointments team / waiting list team to find out where you are on their list. Also, if you still can’t get hold of your neuros secretary, write to him/her, explaining that you’re waiting for an appointment to discuss where you go from here.
You could also try the neurology nurses based at your hospital, they tend not to be MS specialists, but might be helpful in getting hold of the MS nurse or the neuros secretary, even just to get his/her contact details.
Ultimately, if you feel you’re getting nowhere and have no help from the medical professionals, try contacting your local Patient Advice Liaison Service (PALS). You should be able to find out how to contact them from your hospital website.
Hopefully you’ll get some guidance soon and be able to start on a good DMD asap.
Sue
Hi Jamie. Do you have an email contact for your ms nurse? I find this usually gets a swift response, more so than a left voicemail which can easily be forgotten.
Thank you for your replies.
i finally managed to obtain the telephone number for my Nurse today, I called and a answer machine message advised he is on holiday until first week in September, I guess that explains why I haven’t heard anything to date.
I will try again next week, fingers crossed!