Friday 2nd December: had a funny turn this morning. I’d had a headache all night, and by 8am I felt awful. My head went hot, my feet cold, my mouth hot and I felt shaky when I stood up. My stomach and mouth didn’t feel well. I improved by about 10am and got up. My partner suspected it was a hangover, even though I hadn’t drunk much. This could have been a consequence of the amantadine, which warns about alcohol. Someone with a walking stick overtook me and it made me downhearted again.

INTO DECEMBER
Thursday 1st December: the MS nurse rang to check if I’d heard about my drug-delivery for Copaxone (glatiramer acetate). She said it was due today or tomorrow and I could have an appointment the week after next for injection-training. Later I had a call from the drug delivery company to say it wouldn’t be delivered until next week, as a non-scheduled delivery.

DLA form

Wednesday 30th: I filled in and sent off the DLA application form. I didn't put nearly enough information on the form, and didn't spend nearly enough time on it. Hey, it's about 40 pages!

Monday 27th: I went for an assessment with physio/OT at the Cherry Tree Hospital. Are there any other hospitals I haven’t visited yet? It turned out to be just the filling-in of a questionnaire, although they did suggest my applying for Disabled Living Allowance, which may help me get to work. I was fairly mobile now, so I didn’t think I’d be eligible.

Oh how misinformed I was! I was eligible, and should have applied there and then.

Sunday 26th: first thing, I started taking amantadine, at a 100 milligram dose. No side-effects.

Try again....

Friday 25th: I collected only half of prescribed drugs because they were out of stock!

Thursday 24th November: I collected the new prescription and went to the pharmacy. Unfortunately, they had to order in the amantadine syrup.

Wednesday 23rd December: I sent off forms for registering with the local ring and ride service, and for Access to Work help.

Tuesday 22nd: I returned the prescription for capsules and requested the syrup form of amantadine. I wouldn’t be able to get the prescription until Thursday now.

Sunday 20th December: I spoke to a pharmacist who told me that amantadine was available as a syrup in the U.K. - useful when I have problems swallowing tablets.

Wednesday 16th November: I met with the MS nurse who, unlike every other member of the medical profession, seemed to be happy that I’d found out my own information, and indeed named some medical reports and websites to read. She was treating me like an adult, and was happy to answer my (many) questions. She seemed confident that there were people out there (and pointed me to them) that could actually make a positive difference. She told me to fill in a tiredness log before I started to take the amantadine in order to gauge how well it works.
I told her I had chosen to go on Copaxone.
I was still having low moments about the diagnosis though – you have to have something seriously wrong with you for a medical person to come to your home.

Tuesday 15th December: I received a ‘phonecall from the GP surgery to say my prescription for the amantadine was ready for collection. I worked all day on choosing my Disease Modifying Drug for MS.
I picked Copaxone because it had fewer side-effects than the three beta-interferons also available. But it was to be a daily injection.

Thursday 10th November: I started taking daily evening primrose oil (for Gamma Linolenic Acid), and vitamins D and E as supplements

Diagnosis = Multiple Sclerosis

You see, now I get a diagnosis. At last. At least I'd already read up on MS and knew some things about it.
It was only because I asked about treatment for the extreme tiredness (fatigue) that the neurologist said I could try amantadine hydrochloride for it. He would have to tell my GP that I should have it, as it is an off-label use.
Luckily, this area has an MS nurse and there and then she handed me some information about disease-modifying drugs, from which I could pick one to suit, and she made an appointment with me next week at home.
I felt like a big hole had opened up inside, never to be filled again.

And just when you thought.....

Tuesday 8th November: the neurologist told me the lumbar puncture results were positive for MS. Great. But the information I had got from the GP’s surgery last week was that the lumbar puncture results were normal. You could have blown me down!

Friday 4th November: I rang the neurologist’s secretary at Stepping Hill; she said I had an appointment next Tuesday for which a letter had been sent out. I received the letter later.

Monday 31st: I rang the GP surgery and the receptionist told me the lumbar puncture results were normal.

Wednesday 26th October: today I received a call from the neurologist’s Hope Hospital secretary informing me that she was preparing my discharge form following my lumbar puncture, and that the report would be signed by a registrar and sent to my GP this week, and that I could discuss those results with my GP. I later received a reply from the neurologist to my letter of request for my VEP results – completely normal. So it seems I have, still, a discrepancy in test results and a diagnostic puzzle.

Monday 24th October: I rang Manchester Royal about VEP results, Hope Hospital about lumbar puncture results, and Stepping Hill Hospital about a neurology appointment and both of Dr. Talbot’s secretaries. The VEP results were only sent out last week after all, lumbar puncture results “would have been sent” to the Hope Hospital-based secretary – but I couldn’t get confirmation they HAD actually been sent out, I was not in the system for an appointment at Stepping Hill, and the Stepping Hill-based secretary was working on data generated on the 14th October, and she hadn’t got to mine yet. Also the neurologist was currently on holiday. Nobody was authorised to let even my GP have the results, and meanwhile I have nothing to go on despite all my efforts. Will someone please let me see MY results?

Tuesday 18th October: it is 3 months since I was told I should have the lumbar puncture and VEP tests. I still have no results.

Monday 10th October: visit to GP. I asked the GP if he had had any word from the neurologist (I was thinking results?) and he said no. This was a porky, if ever I heard one, because I could read on his computer screen that he had received a report from the neurologist. Why is the GP scared to discuss anything? Again, they're items to do with MY health, so why cannot I see them?