The symptoms and progression of MS
The symptoms and progression of MS are unique for everyone.
MS for each person has unique symptoms and rate of progession
It is both a complicated and complex disease. I believe that Relapsing Remitting Multiple Sclerosis and Secondary Progressive Multiple Sclerosis are different diseases. I always thought this was a possibility. RRMS comes and goes, SPMS gradually nibbles away at the central nervous system and the progression of all the symptoms accelerates.
Relapsing Remitting
Around 85% of people with a positive diagnosis of MS will have the relapsing and remitting type. It is characterised by attacks or flare-ups during which new symptoms appear or old symptoms worsen. These are known as relapses and may be mild or severe but all may leave lasting damage to the nerves. The relapses may last for days, weeks or months. The frequency of relapses, the severity of symptoms experienced and the time beteen each relapse or the remission, between attacks are all unpredictable.
Medically speaking
A relapse is a sudden event which shreds axons and nerves and scars the myelin sheath. After the relapse the disease goes into a state of remission but as a result of the damage to the nerves the body does not make a full recovery. Does the body find a different way to send the message if the original pathway is destroyed that it is no longer of any use?
In my case
I had two relapses, 1979 when my bladder had two serious spasms and 1994 I suffered double vision which led to my diagnosis. In both cases the symptom disappeared within a few weeks of the relapse. It is fair to say that over that 20 year period the MS did not noticeably affect my life. There was no gradual worsening of the symptoms. I honestly thought that MS was not going to affect my life, little did I know. In 1999 I was still a fit and healthy person.
Secondary Progressive
Something like 65% of people diagnosed with relapsing/remitting MS will go on to develop secondary progressive MS. The MS will develop into secondary progressive MS about ten years after the first relapse. Secondary progressive MS is characterised by an ongoing gradual progression of the condition, the disabilities becoming more and more pronounced. The frequency of relapses decreases or stops but the overall disability increases. Only too frequently the mobility is affected and this will create balance problems as we all know each person’s MS is different, the aggression or rate of progress, what it affects and the time spans can differ quite dramatically.
Medically speaking
Patients with PRMS and SPMS will most likely have a steady but gradual worsening or progression of symptoms. Sometimes attacks or relapses which involve sudden development of a new symptom or a worsening of an existing symptom can occur.
Drugs that help to reduce the rate of relapses in RRMS are not effective in Progressive MS. For example Beta interferon drugs are not effective in stopping progressive MS yet are used successfully in RRMS. Tysabri is seen as an important drug for RRMS sufferers, only now is it being tested to see if the disabilities for SPMS patients can be stopped or flat-lined
In my case
In 2000 I realised that the progression of my MS was affecting many different parts of me at the same time. Drop foot and drop leg started to become more pronounced and my balance started to become an issue. My bladder problems would now occur more frequently especially when I took exercise. Coordination problems started, by about 2004 I could not run, going up or down a flight of stairs started to become more difficult. The double vision became a signnificant problem to the extent that I had to stop driving
Conclusion
My disease changed in 2000. Now my MS was different to what I had had from 1979. The earlier MS had very little impact upon my quality of life. Since 2000 the symptoms have not changed but the progession of the disease has affected the quality of my life.
What has happened?
My walking is reduced to a few yards on a flat level surface. My balance is only visual; I can not stand up or move with my eyes closed. Double vision has stopped me from driving, Cognition problems have crept in and the dreaded fatigue means I need more sleep. I need drugs to counter the stiffness, control the neuropathic pain, help me to fall asleep, control the spasms of my muscles and bladder. I use an orthosis and MusMate to facilitate walking
More has happened in the last 14 years than in the previous 20 years, The symptoms have become much more pronounced and the progression has accelerated since 2000.
We understand the problems SPMS causes, non sufferers think they do but so often they don’t see the other side. Why does everything take so long, why do I find it diffricult to give a direct answer or the anger and anguish when I break something or just fall over?
They say ‘Oh, you’re just getting old I’m just the same’ but thay aint
I So agree read your article and could see my symptons only I nevergiven a name till I had SPMS