Please give me some hope!

Hi, I’m recently Dx with RRMS (July) & am having no luck with my MS nurse at all, just feel so down about it now. Was having a major relapse when I was diagnosed & I am also bipolar. I have been hospitalised a couple of times recently when I thought I was having a breakdown but actually was complete exhaustion. I also have 2 very young children (3 years and 9 months) but they are very good and sleep 7pm-7am so I am very lucky. I have taken the Dx very well as I knew it was a possibility, I had Optic Neuritis 12 years ago and have very limited vision in my left eye now. My problem is that I spoke to my Ms nurse about my problems which are mainly balance, vertigo and fatigue when I had my initial consultation with her in September and she suggested that I try Amantadine for the fatigue as a start as well as going into hospital as a day patient for assessment when I relapse to assess me for steroid treatment and possible DMD’s depending on how many relapses I have (normally 2 or 3 a year when I’m not pregnant). So, the fatigue is a major problem for me having 2 little ones to look after, I’m normally in bed by about 9pm myself so get plenty of sleep. I have phoned the nurse 6 times now as I have heard nothing from her, left messages and she has not rang me back and I have a CPN who is my care co-ordinator who has also rang her a few times and on the one occasion she was able to get through she said she would look at my case & contact my GP to tell him to prescribe the Amantadine as a matter of urgency well over a week ago and I phoned GP today - they have heard nothing. I realise that fatigue is probably quite a minor symptom of MS comparatively but my whole body is so tired, I struggle to even lift my legs up to walk sometimes and this has been going on for so many years now. I’m sure MS nurses are very busy but it’s really getting me down now, I’m feeling that I am too much trouble for her. Sorry for the rant. Kate xx

Kate - fatigue is one of the very worst symptoms of MS as it can be so debilitating, especially when you need plenty of energy for your young family! The MS nurses here are similar to the ones where you are. I really think you need some help and support. Can you ask your GP for help? If not keep bothering the MS nurses until you get somewhere! This is not on - I hope you get some help! Teresa xx

Thanks Teresa, I should have mentioned that I have in desperation been to see my GP and I NEVER go to to Drs, GP was very nice but said she would have to fax nurse as Amantadine is a Parkinsons drug which she did not know much about and could not give without her say so, so she faxed and did not hear anything either! I am supposing that if there is 100,000 people in the UK with MS then my MS nurse providing for the whole of Derbyshire would probably be responsible for maybe what - 1000 patients so she must be busy but then if she cannot support all then it’s not much of a service is it? At my wits end now :frowning: Kate xx

I think it’s time to go above her head. Your NHS Trust should have a complaints / grievance procedure which, in your shoes, I would be using. I realise the MS nurses are busy but she has to meet the needs of her patients.

Hello Kate. I agree with annelda…time to complain. If you go to your local hospital website you will find the address for PALS which stands for Patient Advice Liasion Service…these are the people who will handle your complaint. They are there to act as your advocate. You can ring them or email, or write a letter or do all three lol if you so wish. I notice you live in Derby. You have a specialist MS unit at the Royal Derby Hospital, so why don’t you ask your gp to refer you there?? I know its a struggle for you to do this when your not well but you deserve to be treated better then this. Its just not good enough…makes me so angry. Good luck, I hope things got sorted quickly.

Fatigue is one of the major symptoms and often difficult to deal with. What I do is try and either have a rest for a little bit whist also taking my mind off what is happening. I describe it as being like a deflated ballon who needs reinflating. Experiment on things that help you, try and have someone you can really talk to. Hope this helps I have had M.S. Since 1991 at am thought of as weird as I try to be happy and positive all the time.