Health talk online

Even with all the support in the world, diagnosis of a chronic illness can be a dreadfully lonely experience. While the MS Society and the MS Trust and the nurse assigned to me were all utterly wonderful when I was diagnosed, I think what I needed (need) more than anything was to connect with other people who have MS and share experience.

Ultimately, health professionals specialising in MS can give you the lowdown on the disease and tell you everything you need to know and more, but it is extremely unlikely they have the disease themselves. It is like a NASA engineer telling an astronaut what it will be like flying in space.

So it is only natural to turn to the web for advice. But it’s also widely acknowledged that the web can be a wildly misleading and biased source of information (I did Health Informatics as part of my Masters degree, so trust me).

For the most part, I have connected with others so far, through YouTube, various Facebook discussion boards and blogs such as this one.

When I heard about www.healthtalkonline.org on the BBC1 Breakfast show this morning my ears pricked up. This is a new resource primarily for people diagnosed with chronic illness.

The idea behind it is that you can access interviews from other people with the same condition as you or your loved one and hear their experiences of diagnosis and living with the conditions. The patients interviewed are a representative sample from across the UK and the site is managed by experts from Oxford University.

“Sounds interesting,” I thought “must remember to check it out later.”

The BBC feature has obviously increased traffic to the site crashing it’s servers as it was unavailable for much of this morning, but I have just accessed the site and I can report that there is NO information on MS. Clicking on “nerves and brain” brings up dementia, epilepsy, motor neurone disease, parkinson’s disease and stroke, yet there is no information on the UK’s most common neurological condition. Even clicking on “living with disability” only brings up
information on autism.

The only relevant info is on chronic pain where apparently one of the interviewees has MS.

I know, I know… early days… give it time…

…but it’s very disappointing.

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My MS History – Part Five

Between visiting the two consultants, I needed to do my research and also go for a lumbar puncture. I hated the steroids, they had the dual effect of causing severe heartburn, while simultaneously making me incredibly hungry.

At the time it seemed that they didn’t do me any good. Particularly as in the following weeks, I developed a rapid oscillation in my eyes when I looked right (nystagmus) and a strange creeping pain in my feet and legs which for all the world felt like they either wanted to curl up inside themselves and shrivel up or on other days like they wanted to run away on their own. The pain would start in the evenings or on hot days and when I was tired, as early as midday.

After diagnosis, you enter a whole new world. Support networks are everywhere. The MS Society and the MS Trust sent me reams of free information to get my poorly head round. I joined the MS Society for a minimal fee and spent an hour talking to the local rep over the phone.

I found the web awash with discussion forums – some more useful than others.

YouTube seemed to be a mix of useful advice and people moaning about how ill they are.

I was assigned an MS nurse who was to become my contact with the hospital as well as a source of advice and information. She came to visit me at home. I also had a meeting with one of the Occupational Health Nurses at work and my workplace also has a Disabled Workers’ Group who corresponded with useful and supportive advice.

With the information at my fingertips I was able to piece together incidents from my past and build up a picture of my MS history. The most interesting find was a diary entry from four years previously that documented “everything that has gone wrong with my health since starting work at (my employer)” This modest list was as follows:

  • Vertigo. My local practice nurse had told me this was some sort of postural hypotension because it occurred when bending or lying in certain positions. I had a mental image of my aorta being squeezed, every time it flared up.
  • Eye problems. I had flashes and flickering lights in my vision and pain when looking round. I went to my GP, an optician and eventually my local hospital as an out-patient over this and was told that I had symptoms consistent with a detached retina, but apart from that, they were stumped. I pictured the present-day me, in a white coat, leaning over the opthalmologist’s shoulder: “Hmmmm…. how about optic neuritis??”
  • A four week headache that wouldn’t shift with painkillers.
  • Pins and needles on one side of my head.

So there you had it. I had unwittingly documented my first major MS relapse.

Evidence of further MS activity cropped up in other diaries. My diary from the year before diagnosis documented a nasty spell of vertigo. It also showed evidence of fatigue where end-of-the-day diary entries spouted random gibberish and sometimes spiralled off into unintelligible squiggles.

The lumbar puncture wasn’t too bad. The nurse performing the procedure reminded me of someone I knew, so that put me at ease. The local anaesthetic being administered was the most painful bit.

I felt the pop of the needle entering my spinal column and I was surprised to see that my cerebro-spinal fluid was completely colourless. Other than that I didn’t feel any discomfort. Everything had been explained in great detail. I remarked that I had pulled a muscle round lumbar number 4, six years previously and the nurse commented that it was still rock hard and impossible to get the needle through. She did physio for one of the city’s top sports teams, so I guessed she knew what she was talking about.

I was one of the 10 per cent of puncturees who had bad headaches for the next few days and on the third day afterwards (my third day in my new job), I vomited.

Seeing my new consultant was a world of difference the old one. He popped in to yet another session of symptom observation with students in tow, listened to the low-down from his registrar (who amusingly became all flustered) and declared that I obviously had active Relapsing Remitting MS, that I had probably had at least two relapses that year already and that he should put me on some disease modifying drugs as soon as humanly possible.

I had one of those amusing moments like the good vibrations in the MRI. The consultant, wanted to demonstrate to his registrar and his two students how my eyes were moving. I had intranuclear opthalmoplegia as well as nystagmus to demonstrate, so while I followed the path of his pen, I was aware of four pairs of eyes leaning forward and concentrating closely on mine.

I was also set up with a series of testing with the neuro-psychologists to assess the extent of any cognitive problems I might be having, and appointments with my local physiotherapist to assess bladder control. By the time these appointments rolled around, I was well into remission, and seemingly OK, so if anything they will serve as “a useful baseline” to assess any “future degradation.”

One of the marvellous things about a neurological diagnosis is that you get to fly through the MRI of your brain. It is an odd experience and, probably because I was in a vulnerable spot emotionally, quite moving. Seeing it nestling snug inside the thin skull wall, is… dare I say it as an agnostic… an almost spiritual experience.