Continued from earlier blog “14th Instalment: That’s That Then! P1”
Once all the tests where complete and I apologize for not remembering them all but there were such a lot, Dr Shehu handed me over to the friendly nurse who finally introduced herself as Sylvia one of the ‘MS nurses’ at the hospital!
She explained that I was extremely lucky to have been given a double appointment with Dr Shehu and herself as they normally take place on separate days.
She handed me a large envelope which I would have received in the post and explained that I would have then been invited back on a different day for the next appointment, the one that I was in right at that point!
She then went on to explain that the results of the tests have shown that ‘You do have Multiple Sclerosis, we believe you to have Relapsing Remitting Multiple Sclerosis’
Relapsing Remitting (RRMS)
In relapsing remitting MS, people have distinct attacks of symptoms which then fade away either partially or completely. Around 85 per cent of people with MS are diagnosed with this type.
The relapsing remitting label can help to explain MS to others and help you to find the best treatments. But it can’t predict exactly how MS will affect you.
She explained to me what MS is and I was given a handful of pamphlets to take away and read! It was a lot to take in and I felt lost and confused!
MS is the most common disease of the central nervous system affecting young adults. The central nervous system comprises the brain and spinal cord. Together with the nerves connecting to the rest of the body, they form the body’s communication network.Nerve cells (neurons) contain nerve fibres (axons), which are surrounded by a protective sheath of fatty protein called myelin. This protects the nerves in the same way that insulating material protects an electric wire. In MS, damage or scarring occurs to the myelin sheath. This damage (called demyelination) disrupts the way in which messages, or nerve impulses, are carried to and from the brain and so can interfere with a range of the body’s functions.The term ‘multiple sclerosis’ comes from ‘sclerosis’, which means ‘scarring’ and ‘multiple’, which relates to the sites of the scarring, which can occur in different places throughout the brain and spinal cord.The symptoms experienced depend on the position and extent of the scarring or lesions within the central nervous system and on how much damage has occurred, so no two people with MS will have exactly the same set of symptoms.In the earlier stages of MS, the central nervous system can often repair areas of damaged myelin or reroute messages via different pathways of neurons thereby avoiding the damaged areas. This explains why episodes of symptoms (relapses) can be followed by weeks, months or even years when symptoms improve or disappear (remission). However, if the area of damage becomes too large, communication with that specific part of the central nervous system may become permanently blocked.What are the common symptoms at the time of diagnosis?fatigueloss of vision in one eyeblurred or double visiondragging a footweakness of limbsreduced coordinationbalance problemsnumbness, pins and needles, burning sensationsWhat causes MS?The cause of MS is not yet fully understood but is thought to be a combination of environmental and genetic factors. One theory is that some people have certain groups of genes that make them more likely to develop MS. It may be that an external factor, such as a virus, triggers a reaction in those with this genetic predisposition causing the immune system to malfunction and attack its own myelin.
She went on to explain that they believed I was in a relapse which is why I had lost sight, sensation to touch and was also experiencing problems in my left arm and shoulder.
She explained to me what my choices of treatment…
Treating relapses
The options for managing an MS relapse are:
- treatment with high-dosesteroids, either as an in-patient, a ‘day-case’ or at home
- rehabilitation – after steroids, or without steroids being given
- no treatment
In my opinion no treatment was not an option! I decided to have steroids to reduce the inflammation. Then I had to decide if I wanted to have the 3 day intravenous course of steroids as a ‘day case’ or the tablet form which was a 5 day course and I wouldn’t have to go into hospital every day for 3 days.
The thought of the ‘day case’ intravenous steroids terrified me! At that time the thought of having to sit in a room full of strangers whilst connected to a machine pumping drugs into me was not a nice thought at all!
I went for the tablet form, it couldn’t be that bad surely! “I can take tablets easily and doing it this way I don’t have to take time off work!” I remember thinking to myself!
Steroids
NICE says: “Any individual who experiences an acute episode (including optic neuritis) sufficient to cause distressing symptoms or an increased limitation on activities should be offered a course of high-dose corticosteroids.” NICE also recommends that steroids should not be given more than three times in any year, and a course of steroids should last no longer than three weeks.
Steroids are powerful drugs. They often get a bad name in the media because of their association with athletes and body-builders who use ‘anabolic steroids’ to boost their performance and ability. These are not the same as steroids used to treat MS. Used correctly, steroids can be a very good treatment for different conditions, including relapses in MS.
The way that steroids work in MS is not fully understood, but we expect them to:
- reduce the inflammation
- shorten the duration of the relapse
- speed up recovery from the relapse
Steroids don’t affect the outcome of a relapse – any difficulty or disability that might result from a relapse.
Side effects
There are a number of side effects of steroids – as there are with all drug treatments. The possible effects of the drug must be weighed against the possible side effects, ideally in discussion with your MS nurse, GP or neurologist. However, steroids are generally well tolerated when given to treat relapses, and side effects are normally short-lived:
- mood alteration (up or down)
- altered sleep pattern (often difficulty in falling asleep)
- upset stomach or gut – including feeling nauseous
- palpitations (faster than normal heart rate)
- metallic taste in the mouth
- increased appetite
- weight gain (usually short-term)
- flushing/ reddening of the face
- ankle swelling
- acne (temporary)
My Dad took the prescription from the Neurologist who was still in the room & went to collect the tablets from the pharmacy before they closed.
The appointment came to an end. I was told to take the tablets in the morning along with another tablet that was prescribed to protect my stomach.
I was told I would require a follow up appointment and the details for this would be sent to me in the post. The nurse made sure I had all the information that I was given at the beginning of the appointment and advised me that I would have to do a few things…
- I had to advise DVLA of my diagnosis
- I wasn’t allowed to drive until my vision returned to normal
- I should get in touch with
- If I had Critical Illness cover I should
After my Dad returned we made our way to the car, all very quiet. What could be said! I think we were all in shock!
MS is all about being MegaSpecial! 