Hello I had a sensory relapse my first proper sensory one since my definate MS diagnosis. I live on my own and parents are 15 miles away. My symptoms were numbness between legs - not completely but around 70%. I could go to loo 1 and 2 fine but felt odd wiping a numb bum- sorry for the details. Aslo numb left bum cheek which migrated down left leg and slight numb patch under left foot sole. I am about 80% recovered now.
I emailed my MS nurse on Friday 2nd May to tell her with ‘relapse’ in the subject line. She responded next saying “we wouldn’t offer steroids, keep well, good diet and rest. And that she would contact me after that bank holiday weekend (I guess to see how I am doing)”. I have not had any contact from her by email or phone call. Yesterday I emailed her to ask if I can arrange to see her at the hospital (an appointment). I have asked in this email I want to discuss with her if she will be ok supporting me on Aubagio as my neuro wants me to start DMT’s soon.
I am a bit concerned as I need to go on DMT’s and I am a bit concerned the support is not going to be there. It’s a big step for me starting DMT’s and I am thinking of asking my neuro if I can see him every three months while I am new to DMT’s (for support, reassurance and so I can ask questions).
Please could you let me know do MS nurses normally contact patients to see how they are doing during a relapse? If the patient has let them know they are in a relapse like I have. Am I expecting too much from my MS nurse? thanks x
She did say in her email she would contact me after the bank holiday weekend.
I had a big attack Feb 13 and had very brief numbness between legs that went away. I think the numbness then lasted a few minutes it seemed, it was a big shock to me then at the time to feel numb down there but it went away very quickly it was very odd it was so brief.
Then 3 or 4 days later had bladder issues for two days that generally went away too but left me with a slight weak bladder.
I am around 80% - 85% better now. Thanks for your response x
Still no contact from the MS nurse. I have contacted the MS specialist neurologist’s secretary to see if I can arrange an appointment with him. I think I am recovered now. I have a bit of an upset stomach today and constipation. People around me have been unwell with flu and colds.
I’ve only ever had sensory relapses and always had steroids (until I decided they don’t work for me) although I believe some neurologists don’t like giving them unless you’re blind and/or crawling in to see them on your hands and knees!
I would also seriously urge you to consider a DMD - the right one could really change your life. I would say you’d be very lucky to see a neurolgist every three months though - I’ve always been led to believe that’s what you have an MS nurse for.
Oh and I only ever saw my MS nurse for six monthly reviews and during relapses if I needed steroids - and not always then. I would not expect a call to see how I’m doing either so yes, I think you are expecting a bit much unless you live in a very small area.