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?

VEP test at Manchester Royal Infirmary, September 2005

I went by bus, and failed to find the Royal Infirmary for ages. I found lots of other hospitals on the site though. It wasn't well sign-posted for pedestrians.
The VEP took about 20 minutes all told, and despite the technician having the results printed out in front of her there and then, she wouldn't show me them. She wouldn't even tell me if they were in the normal range of responses or not, because she wasn't allowed. Even though it was her job to know. I would have to wait for the printout to be signed by a doctor (who was on holiday) before they could leave the hospital. They would be sent to the neurologist. Iwas told it would be about a week.
They're my results - why won't you let me look at them?
I wondered why people were looking at me strangely on the 2 buses back home... I saw why in the mirror when I got in - the technician had left a big black mark in the middle of my forehead where the electrode positions had been marked!

Lumbar Puncture with Hope, September 2005

A lumbar puncture is an invasive procedure, so I was advised not to drive (I don't) and that I could get there and back using patient transport. I was told to ring my GP surgery and book a ride, stating that I can get in/out of a car, for myself and companion for the appointment time, and that I would be finished by 3pm.
Oh how wrong!
Patient transport is a not-quite gelled system of volunteer drivers who can end up going anywhere! Whether you get a car when requested depends on where else the driver has to go before he gets to you. The car was booked for 7:30 am. At 7:30, I checked it had been booked. At 8:15, I rang the patient transport people, and was told the hospital would wait. The car came ~9, and we got to the ward after 10am. I was shown to a bed, where we sat and waited, and waited, and waited, and ate some of the lunch we'd brought with us, and waited and waited. At 2:45, the neurologist showed up. I asked what was happening, and I got the return journey cancelled.
It was AFTER 3pm when a chap showed up to do the lumbar puncture, again at my bed. The after-care instructions I received were completely different; no 6 hours bed bound, but drinking lots of fluids for the next few days. He got me into position, and yes it hurt, but mostly when he injected the local anaesthetic. It also became increasingly uncomfortable, from very to nearly unbearable, as the fluid was drained. I squeezed my partner's hand tightly throughout, and breathed hard. I can't say it was really painful, at least not like having your nerves moved by a needle as happened before. I hated the dragging feeling as the draining needle was removed.
The chap asked if I wanted to see the fluid, and I was amazed it was a pure, clear liquid, perhaps thicker than water.
I was asked half an hour later if I was ready to return home, and a nurse booked patient transport for me. Eventually, we ate the rest of the food we had with us.
To cut a long waiting story short, we gave up waiting at 9:30 pm, and walked to the (not-so) nearby tram stop, got the next tram into Manchester and then the bus home. My back was very stiff when we got home at ~11pm. I had near-cponstant headaches for the next 2 or 3 days, despite painkillers (aspirin, ibuprofen, paracetamol, codeine...)
I had been told to expect a wait of "several" weeks for the results. This time they weren't wrong. Apparently the testing itself takes about 24 hours!

September 2005. Bureacracy gone mad

I received a date for the VEP test (which I had been told "I may have") from the Manchester Royal Infirmary, but not for the lumbar puncture (which I definitely should have) at Hope Hospital.
I rang Hope. It turned out that I had never been booked in or the LP. They knew I was to have a VEP, and were waiting to hear about it from their own VEP group so that both could be booked for the same day.
"Hello, I'm not supposed to be having it with you...."
I wonder if I would ever have had the test if I'd not rung. I wish I'd rung before. I just sat waiting for 6 weeks.
They said oops, and I could have the lumbar puncture on Monday.
How different that was....

Summer in the sun, August to start of September 2005

More waiting. Nothing doing. Some days were better than others, some were bad. Sometimes I could do some things, sometimes I could do others. At least my speech came back to some extent, and I was beginning to be able to write again. Sometimes I could walk with a limp, and sometimes with no limp. Sometimes I could walk at nearly-normal speed, though that wwas rare. If I looked over my shoulder to check for traffic before crossing the road, I would stumble as my leg did something unexpected. Once I walked into town. But sometimes I stayed in bed.
It was sunny. We had lots of visitors who helped me stay sane! I couldn't do anything, or go anywhere, so I was very glad of their tales of what they had been doing. It gave me some sort of perspective beyond the little box my life had become.

Waiting for Talbo(t) July 2005

July was characterised by waiting, waiting, and yet more waiting.
A few days out of hospital, I received a kettle tipper, long-arm reach and the biggest shoe horn you've ever seen. The kettle tipper was an absolute Godsend - no longer did I have to rely on my partner for absolutely everything, although, having made a drink I couldn't carry it anywhere because my walking was so awful. The long-arm reach meant I could pick things up, and open and close windows, but I've never used the shoe-horn! These items are still with me - I have to return them when they are no longer needed.
I received a letter two weeks after leaving hospital asking if I wanted help from the Adult Rehabilitation team; I replied yes, then over a week later they sent me a letter saying I should ring, and make an appointment. By this time I could use the bath again (just), and I couldn't have physio without a diagnosis, so I turned it down.
Having left hospital, I rang the charge-nurse to make sure I was still going to get a lumbar puncture - somehow. I was assured that she would ring the neurologist's secretary to explain the situation. I should get to see the neurologist, Dr. Talbot, to continue the tests.
I rang said secretary too, several times during the month, and pressed for an appointment, which I got towards the end of July.
Dr T said when he'd given me the report of the MRI, he himself hadn't actually seen the scans, only the report. He said he had now seen the scans, and that I should still go ahead and have a lumbar puncture. He also said I should possibly have a VEP test, but that was dependent on the outcome of the lumbar puncture.
The LP would be at Hope Hospital in Salford, and the VEP would be at Manchester Royal Infirmary in the city centre.

Testing, testing.... second half of June 2005 in hospital

I spent the next 2 weeks in hospital. The rheumatology ward was full of people without rheumatology problems.
I was told that I wasn't going to have a CAT scan because I didn't have a burst blood vessel in my brain after all, and then a porter turned up to take me for one. I wasn't told what that showed until the folowing day: something, but no burst blood vessel. The something was never really explained to me.
I would have been allowed home for the day the first Saturday I was in, but noone had told me. I was clearly upset that day, and someone told me I could visit home, so I pushed to arrange it for the Sunday. I was by now unable to do the stairs at home without my partner holding me up, and I couldn't even step over the lip of the back door. But at last I had somewhere I was allowed to be upset.
Back at Stepping Hill Hospital, I kept having more neuro exams with every new registrar covering each new day, and then with somebody more senior too. Also with lots of medical students and registrars swotting for their exams. I was alarmed at how, each time, I could do fewer and fewer of the tests, such as waslking heel-to-toe, or moving my hands etc. Eventually I couldn't even put one foot at the front of the other. Sometimes, if I wanted to move my right arm, I had to use my left arm to move it. Or I'd be carrying something, and then my attention would switch, and I'd just drop it.
I was not in need of nursing care though, and I would far rather have been at home, not to mention the strain visiting me every evening was having on my partner. And I was SO bored. However, when I finally saw a neurologist I was advised to stay in so that I could have an MRI scan - apparently there was a 6-month wait if I were an out-patient.
In the second week I started a 3-day course of high-dose, oral corticosteroids called methyl prednisolone (I think). I had no side-effects and this was the first time my symptoms stopped getting worse. I saw the occupational therapist a couple of times. She helped me think about all aspects of my home life, and how I would deal with them from a practical viewpoint. She showed me examples and catalogues of self-help equipment available. I was registered to have a long-arm reach because I couldn't bend/squat down without falling over. Also, a kettle-tipper to take the weight of pouring the kettle. I was struggling with the bath so she referred me to the local Adult Rehabilitation team, to get social services to see if they could fit a hand-rail. She also got me an appointment with the in-hospital physio, who showed me how I might better tackle going up and downstairs. Interestingly, because of the shape of the hand-rail, I could do the hospital stairs whereas I couldn't do them at home.
I was allowed out again to visit home the second weekend. A real blessing.
I had the MRI scan. The same person who had badly explained the CAT scan told me that it showed nothing to indicate MS.
The neurologist 3 days later told me it showed damage as you would expect from a healthy 50-yr-old (I was 35), and recommended I have a lumbar puncture, again as an in-patient. I just never knew from one day to the next whether I was going to be allowed home that day.
I was told the lumbar puncture would be done on the Friday. On the Wednesday before, someone came to tell me about what it entailed: pain, headache, lying down for several hours (ie being bed-bound). Then they said it would be on Thursday. Then at 4pm on the Wednesday, two people came to do it there and then. This was done at my bed on the ward, and continued during visiting hour. My poor neighbour and her visitors had to leave and find somewhere else to go because it was botched.
One was training the other, and it was disconcerting to hear the errors made. Anyway, they both tried with me sitting up and lying down and couldn't get any fluid out. They made me cry out and scream in agony as they touched first one then other nerves. They tried using more local anaesthetic, but I was in such pain. Eventually they agreed to give up "for today", let me rest and they'd "come back tomorrow".
I was still crying and in agony when my partner came. I spoke to the charge-nurse and with my partner's help I discharged myself; there was no way I was letting that pair come near me again.

Return trip to doctor and a single to hospital please. 15th June 2005

On the Wednesday I went back to the GP's surgery. I saw a different doctor, who repeated the tests as before. I couldn't do the finger to nose then pen thing with my right hand. I asked if it was early-onset Parkinson's, Lyme disease, Huntingdon's , MS, or a stroke. She said it had come on too suddenly to be any of them, and was most likely to have been an aneurism, that had now burst (blood-vessel in my brain). She said I should go in to hospital that day. She rang the hospital, but there wasn't going to be a bed available until that afternoon, so I was sent home to wait for a "patient transport" ambulance. The hospital rang that afternoon to tell me that a bed was coming available, but that I would have to wait another hour and 1/2 for the ambulance. About 10 minutes later, a full paramedic ambulance turned up and the paramedics barged in when the door was opened! I was stood there with my bag packed, and they were all dressed up with nothing to do!
I arrived at around 4pm, in the Medical Assessment Unit of Stepping Hill Hospital, Stockport. I was tagged, and had a canula shoved in my left arm, from which they took a blood sample. I never heard of that again... A nurse had to fill in a form covering everything I brought with me including describing everything and describing its colour!
A very astute registrar nade a neurological examination of me. I had to take my jeans off, and I did the finger to nose then pen test again with both hands; running my left heel down my right shin then vice versa; patella hammer on my knees and elbows; the soles of my feet were stroked with something sharp, then soft; my legs were dabbed with something sharp then soft, then something cold; I had to identify whether I could feel a struck tuning fork against my limbs; I had to name the indicated parts of a watch; I had to hold both arms out horizontal with my eyes shut; I had to resist pressure put on my arms held thus; I had to identify with my eyes shut whether my big toe was being held up or pushed down ..... if there were any other tests, I have forgotten.
This was the only person who was willing to tell me anything. He asked me if I had any suspicions as to what my condition was, and when I said I suspected MS, he said that did seem a likely candidate. It probably wasn't a stroke, or burst blood vessel. I was relieved it wasn't something requiring immediate surgery. But I did have to stay in.
My partner went home and I sat and waited for whatever came next.
At about 9pm they told me I was being transferred to a ward. I was finally moved at around 11:30pm, by being dragged backwards in a wheelchair so I couldn't even see where I was going. I could just see all these side rooms in darkness. I went to bed in Ward A1, which turned out to be rheumatology - surely that wasn't where I was supposed to be?

To the GP: first neurological exam, June 13th 2005

On the Monday, the GP did my first neurological examination, although I didn't know that was what it was.

I was unable to walk far in a straight line on my way to the surgery, but I had an hour's wait to be seen, in which I recovered a little. The doctor asked me to walk in a straight line heel-to-toe. I could.
He asked me to touch his pen then the tip of my nose, first with the left hand then the right. I could, although I had to concentrate.

I cannot remember now what else he asked, but I could do all of his tests, if a little awkwardly. He told me he would refer me to a neurologist. He told me to come back if I got worse. I had to tell him I didn't think I should be at work (in the lab, or on a chemical plant, or up ladders, or on roofs etc). He said if I didn'think I should be there I should take a few days off! I arranged with my employer to attend a training course arranged for the next day.

Later on I found talking difficult, and I noticed that my speech was sounding a little slurred, but my partner didn't think so.

On the Tuesday, I went off to my training course, still having problems walking. I found it difficult to understand, and by this time I couldn't write at all with my right hand, so I put a lot of effort into trying to write with the other hand. It was getting more and more difficult to speak, I was slurring and I was absolutely k****ered. Getting home was a huge ordeal.

Symptoms:

• very poor coordination (right hand, arm, leg only)
• problems thinking straight
• difficulty thinking at all
• speech difficulty (obvious slurring, slow speech)
• tiredness

On-going troubles

On the Saturday I walked down the road to the nearest GP surgery. Walking was strange. I was struggling to walk in a straight line, and I was still tired despite plenty of sleep. I was disappointed to discover that my local GP surgery no longer opened at all on a Saturday as it had 18 months previously. Later I went shopping, and kept bumping into people where it was crowded. Carrying the shopping seemed harder than usual too.
I put the dishwasher on, a little clumsily perhaps. "Surely it must be a virus?"

On the Sunday, I fell sideways to the right when I tried to kneel down to fill the washing machine. There was no way I could have put the dishwasher on. I was walking into walls, doorways, everything. I was bashing everything with my hand, my knee, my foot... I was getting quite an array of bruises on my right hip and hand and down my thigh and calf.

Symptoms:

• worsening co-ordination of right side
• tiredness

I was getting more scared. This didn't seem like a virus, or a bacterial infection. I began to search the web, looking for problems with walking. WhatI found seemed to confirm that this was indeed scary.

Friday 10th June 2005. A bad day. Oncoming symptoms

I had a bad start to the day.
It was Friday. It was early. I had problems steering my cycle in a straight line when I pulled on the handlebars up a steep hill: a hill where I didn't usually have problems.
I had to decide quickly whether the train at the platform was mine or not, and I dithered too long. The train left. It had been mine.
I put it down to tiredness because I hadn't slept well during the night.

I got a coffee to while away the 45 minutes wait. When my train arrived, I rammed my cycle into the side of the door instead of getting it through the doorway, and spilt said coffee all over the handlebars and everywhere.
I put it down to clumsiness, because I was tired.

I got to work and decided I'd better have a coffee. I spilt it all over the desk and my hand.
Again, clearly I was tired.

I started work in the lab, and my hand was all shaky when I was trying to pipette into volumetric flasks; I had to use both hands. I had had a major run-in the day before with my manager, with whom I was going to work later on that morning, and I really wasn't looking forward to seeing him.
So I put it down to "nerves". Little did I know.....

I kept knocking glassware over.
"I really was clumsy today."

I made several mistakes when writing labels.
"Must concentrate more."

Later on I felt a little wobbly, and ducked out of working up a ladder. My rightleg felt like it was going to give way any minute. By this time I knew something was wrong. I was weaker than usual too.
I thought I'd got a virus or something.

Going to lunch I walked into the handrail at the bottom of the stairs. I couldn't get my spoons of chocolate pudding and chocolate custard cleanly into my mouth and kept having to wipe the custard off from all round my mouth. When I left the table, I couldn't hold my tray horizontally; the bowl kept sliding forwards and backwards. I was slow at work in the afternoon. I tried to point to a piece of equipment, and my hand flew out and I knocked it so hard it hurt. Then, I was having problems writing. Writing was difficult, very slow, very untidy, and I kept using the wrong words or mis-spelling things. My book was covered in errors.
I was very glad to go home that evening.

I was fine cycling to the station, but had a great deal of difficulty getting my bike on and off the train. When I tried to cycle up-hill, I kept steering to the right and having to compensate, and yet there didn't seem to be anything wrong with the bike. Then my leg started to give way, initially at the knee, and then at the ankle too so that my toes would suddenly hit the ground as I tried to pedal. This became more frequent. I was quite scared when I got home. My right leg was really achy, and all my right joints felt they were going to give way. I was extremely tired, and went to bed very early.

Symptoms experienced that day:

• difficulty thinking straight
• coordination of right side only (hand, then arm)
• use of language combined with fine hand coordination (writing)
• weakness of joints on right side only (leg, then arm and hand)

I decided I should see a doctor the next day.

Pre-diagnosis symptoms May 2003 and June 2005

A bit about me:
I was 33 when I first had symptoms of MS. Of course, they weren't recognised as such then. Having received the diagnosis I entered a new world.... Any family with MS: no. Brought up: Leicestershire (not known for being near the equator....) Previous major illnesses: glandular fever (one month), flu (two weeks), streptococcus infection (one month)
My interests were: hiking mountain-walking cycling (but I haven't been able to do them for the past few years)so new on the list is research into news about MS.... and distance-learning courses (molecular biology) to try to get a new career off the ground....

I know there are lots of sites dealing with multiple sclerosis, but none covers what happens prior to diagnosis. Also, my set of symptoms were not the norm - first RSI was diagnosed, then carpal tunnel syndrome. Two years later it was a burst blood-vessel in my brain as the diagnosis, for which I was shipped off to hospital, then perhaps early-onset Parkinsons. Five months after the hospital stay, eventually, MS was confirmed.
The "typical" first symptoms are:

• loss of vision
• double vision
• numbness
• muscle weakness
• balance problems
• bladder disturbance.

Nope, I didn't have any of them. The first symtoms I got in May 2003 started at the tip of my thumb, with a throbbing, which turned into pins and needles over the insides of my thumb and the next 2 fingers. After some months, my middle finger got better, but the rest stayed bad, with a feeling of electric shock if anyone or anything touched the inner faces of those digits. So my first symptom was:

• paresthesia

Two years later (June 2005), I became very very tired over the course of a week, and one day my right leg felt odd, but I couldn't (and still can't) describe how. The next day I struggled to cycle, especially uphill. I thought I was coming down with a virus. Second and third symptoms:

• something wrong with my leg
• fatigue

I then had a whole train-load of symptoms which put me in the hospital. I'll cover those separately - these were the ones that made the medical profession accept there was something wrong.