"I can't manage outpatient treatment for my MS"

About: Royal Hallamshire Hospital / Neurology

(as the patient),

I was clinically diagnosed with MS (multiple sclerosis) 17 years ago.

I had quite a number of relapses at the beginning but then, about 8 years ago, it seemed to be more benign. I still had relapses, but none that I could not recover from by extended bed rest at home. I therefore did not trouble anyone except my immediate family during these last few years. The deterioration has been slow and gradual.

I had not been feeling well for approximately 3 months. I never went outside at all during these 3 months due to exhaustion. It was when I started getting pain and severe muscle spasms that I realised that I needed help. However, it was such a long time ago that I had lost all the support I needed and had previously.

For 4 long weeks I suffered severe pain, being told to go here and go there and each effort cost me dearly.

Eventually, I was admitted as an emergency, to the Hallamshire hospital for the treatment I needed. Now I have all in place again and feel more secure.

However, I feel that IV steroids as an outpatient (or any treatment as an outpatient) is not appropriate for me because I simply do not have the energy to visit anywhere when I am at my worst. Good job the hospital eventually realised this, but it took an emergency admission by ambulance to do this.

I dread the next attack (yes, it is an 'attack' not a relapse), but I dread it most because I may be expected to attend as an outpatient when I can barely sit for longer than 10 minutes.

It was much better 10 years ago when L1 admitted patients for treatment. Most of us had MS and we found mutual support.

For those who prefer outpatient treatment, that is your prerogative, but if you felt as ill as I do, you would not wish to get out of bed for anything. 3 months hardly leaving a bed, let alone the house, is bad enough. Being asked to travel long distances as an outpatient is more than should be asked.

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