More thoughts on living with Relapsing/Remitting MS

The views in this blog come from my own experience with MS – if you have MS or know someone who does, the things that worked for me, may not work for you.

MS is a disease without a certain prognosis. At the moment of diagnosis, that very minute when a neurologist tells you that it’s MS, it could be one of a number of different types of this infuriating and horrible disease.
I think I’m lucky – in fact, I know that I have been very lucky. I could have been diagnosed with Progressive Relapsing Remitting MS – which at that time was an awful diagnosis, with a very bad prognosis. Now, people have two drugs that may stop the disease in its tracks – Tysabri and Campath.
I was lucky – mine wasn’t a Progressive form. It was aggressive and active though. The word ‘Relapse’ may be a clinical definition, but it is a weaselly word. It doesn’t describe what happens, which is a massive attack of neurological symptoms.
One minute I am fine, the next I could be ill – it happens quickly. I don’t panic now and wait for a while to assess the severity of the symptoms.
If they are new symptoms, then I’m most likely having a relapse – a new attack.

The symptoms that led to my diagnosis went like this.
Got up. Had shower. Went on the internet. Did some vocal warm-up exercises. Got in car and went with husband and kids to Pasa Raya, Jakarta’s enormous department store.
We got out of the car and suddenly, on the short walk to the door, my vision blurred and all images were doubled. I could see two of everything – but which was the real image?

I found that if I covered one eye, then I could focus and walked to the escalator and on the way up to the first floor, told my husband.
We didn’t stay too long – just enough time for lunch and then we decided to go home and wait to see if my eyes settled down. They didn’t.
So, after a lot of to-ing and fro-ing to the local clinic and a CT scan (which showed nothing) I was sent off to Singapore. I was shown a paragraph in a book of symptoms and none of the diseases associated with double vision looked good.

Here’s the lucky bit. Once I was diagnosed, I had the support of a wonderful neurologist Dr P N Chong at Mount Elizabeth Hospital in Singapore. We had great health insurance and it made the first two years, much easier to bear.
Another bit of luck – we were living in expat heaven. Big house, swimming pool, maids, drivers and no school run thanks to a school bus. I didn’t have to walk anywhere much or take the kids to school.
I was ill though. My life as a choral conductor/trainer was over. I had some awful relapses/attacks and my social network crumbled.
I was left with my true and good friends, Glenys, Keiko, Raymond, Colin and my family. I was alone with my MS. It’s very rare in Asia.

When we returned to the UK, it was a shock. Walking was difficult. Nerve pain became an unwanted companion and the enormous amount of visual information to be processed just on a walk into town, was too much. I felt totally drunk and walked as though I was as well.
I should have applied for Disability Living Allowance, but just couldn’t bear to fill in the forms. I kept thinking ‘yes, but what if I improve?’

With the exception of my arthritic knees, I am stronger and mentally sharper now than at diagnosis. I haven’t really pushed myself yet, but I can play the piano for an hour and so I know that cognitive fatigue isn’t too bad at the moment.
It’s taken a lot of experimentation to get this far – I have gluten intolerance and suffer badly if I eat bread. I like bread, but the fatigue, nerve pain and acute heartburn and irritable bowel syndrome that come with it, aren’t worth it.
I had to move from the UK. The humidity makes me feel ill and constantly tired. Here, in heavenly Green Spain, I feel good.

In the two years prior to diagnosis, I was having odd symptoms every eight to twelve weeks, each odd illness lasting about six weeks. Had I not started Rebif (beta-interferon 1a) this pattern of attacks would have continued.
Now twelve years later, I can plan ahead – yes, I’ll have good days and bad days, but I know that I can build up my stamina and muscle strength in order to be as active as possible through the summer months.
If – IF I had carried on with relapse/attack after relapse, I may well have become to weak to be able to walk. I could have had another deadly attack, like my very first one some 8 years before diagnosis.

The Disease Modifying Drugs (Rebif, Copaxone, Avonex, Betaferon) are constantly belittled by those who don’t understand how they work, or who have not had any benefit of relapse reduction. The statistics of 30% are often quoted. That the drugs only work for 30% of RRMS patients and only reduce relapses by 30%.
Well, maybe – but these are statistics and not real numbers.
I would say that in my case, my relapse rate has been cut from between 4-6 per year to 1 every 5 years. That’s better than 30%. A lot better.

I’m writing about my personal experience. There are people who have had great results on Low Dose Naltrexone alone and/or with Venoplasty for CCSVI, or Snake Venom or Hyperbaric Oxygen and/or a diet. They write from their personal experience – which is valuable information.
There are sporadic arguments on various message boards about these other ways to deal with MS. The arguments always come from someone who has had a great result from their alternative treatment and who then just has to launch an attack on the DMDs and how stupid and misled the other people who take the MS drugs are.
I don’t understand why they feel that they have to do this. I have seen very few instances of the reverse argument.
Most people on a DMD are happy that it works and thankful that their health authority is funding it. The same goes for Tysabri and Campath. These drugs cost a lot of money and we nearly didn’t have access to them at all.

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