Tag Archives: neurologist

17th Instalment: The Steroids

Thankyou text

 

The steroids

My first experience of steroids wasn’t one I wanted to experience again!

I was so frightened to take the tablets. I kept delaying, using work as the reason I couldn’t take them at that time. I had to cover at a different branch so I had planned to start them the weekend after I had finished covering at Knowle.
This was an excuse, not a reason!

It wasn’t until I experienced the loss of feeling in my feet and my MS nurse making it very clear to me how important it was to take the steroids that I started the course of tablets!

The neurologist prescribed 10mg Omeprazole that I had to take before I took the steroids. These were to protect the lining of my stomach as Steroids can cause digestive problems. Anyone with previous gastric problems should take medication to protect their stomach. I have had problems in the past with my stomach and so would definitely need these tablets.
I have since found out that this medication is always prescribed at my hospital for anyone who is about to undergo treatment of methylprednisolone (Steroids) for a MS relapse.

When I saw that one of the side effects to the steroids was indigestion I was so worried about taking them. I had a bad feeling because of my earlier history of stomach problems. This was a ‘reason’ for delaying taking them not an excuse!

 

It was the day after speaking to the nurse that I decided it was time to ‘put my big girl pants on

 

I took my ‘pre’ steroid tablet (Omeprazole) easy!

Next I opened the bottle containing the ‘high dose oral methylprednisolone’- steroids. I put out the palm of my hand and gently shook the medicine bottle until the tablets gathered in my hand.

5 tiny blue tablets taken all at once everyday for 5 days! To be taken with water or juice. That is all it said, no other specifications.

 

Oh my the taste! As soon as I put the tablets in my mouth they started to dissolve when they touched my tongue!
The taste of metal was awful

 

I had to find something, anything that I could eat or drink just to take the taste away!
The next day I made sure I took the tablets with fruit juice not water!

I have since been given a tip when taking the tablets, put them inside a bit of bread, small enough to swallow. That way you don’t get the vile taste in your mouth!

 

After taking my first dose of ‘oral steroids’ I continued to get ready for work and headed over to Knowle, the branch where I was covering for the next few days. My partner took me as I have always gotten anxious driving to new areas especially when on a time restriction.
The day went really well, in fact whilst I was taking the medication I felt good but only when I was distracted with work. I felt really positive and I think I performed better!
The truth is, the steroids made me quite hyperactive during the day so when I got home the extreme tiredness hit me!

I was in pain with my joints and my muscles were really tender. I remember feeling as though I had been hit by a steam train!

The positive with the steroids was that I didn’t have any troubles sleeping at night! When my MS nurse asked me how my sleeping was she very shocked to hear that i had no problems!

Although when she found out I was still working whilst taking them she didn’t seem impressed with that! I hadn’t realised it would be a problem!

 

Looking now at what the possible side effects are I think I did quite well!

Lets have a look at my check list of side effects. I have written in red any side effects I had:

  • fever or chills
  • flushed, dry skin
  • fractures
  • fruit-like breath odour
  • full or round face, neck, or trunk
  • heartburn and/or indigestion (severe and continuous) YES
  • increased hunger YES
  • increased thirst YES
  • increased urination
  • loss of appetite
  • loss of sexual desire or ability
  • lower back or side pain
  • menstrual irregularities
  • muscle pain or tenderness YES
  • muscle wasting or weakness YES
  • nausea
  • pain in back, ribs, arms, or legs
  • painful or difficult urination
  • skin rash
  • sleeplessness
  • sweating
  • trouble healing
  • trouble sleeping
  • unexplained weight loss
  • unusual tiredness or weakness YES
  • vision changes
  • vomiting
  • vomiting of material that looks like coffee grounds

More common

  • Increased appetite YES
  • Abnormal fat deposits on the face, neck, and trunk
  • acne
  • dry scalp
  • lightening of normal skin colour
  • red face YES
  • reddish-purple lines on the arms, face, legs, trunk, or groin
  • swelling of the stomach area
  • thinning of the scalp hair

So as you can see out of all the side effects, I suffered from the mild ones!

 

The last day of my steroids was a Sunday. This is the day that I was originally going to start them!

I woke in the night in absolute agony with my stomach! My partner had to phone the emergency doctors so I could be prescribed something to ease the pain.

I knew why I was in so much pain, I had problems many years ago with my stomach that was investigated. The only explanation I was given after my tests was that I have a very sensitive stomach. This is why I reacted so badly to the steroids.

When I was prescribed my steroids I was also prescribed Omeprazole 10mg, this wasn’t a high enough dosage for me & every time since then that I have needed steroids I have to be given twice the amount.

 

We didn’t get any sleep that night and I was in no fit state to work on the Monday. I was due at my normal branch but would be working on my own as were so short-staffed. This meant that I needed to call the area manager to get someone to open the shop and cover me. I also needed to organise a way to get keys & the alarm code to who ever would be covering! I could hardly stand up because I was so worn out from the pain let alone organise all of that!

 

I had to leave it up to my partner to do every thing. She also had to collect my medication that I had been prescribed and let her own boss know what was happening!

All I really remember of that morning was sitting slumped in the passenger seat of my car. Waiting for my partner to get my tablets and leave my key in the café next to the shop for the woman who was covering for me.

I was driven home where I slept for the day, I woke to have some soup for my dinner and then slept through the evening

 

I have never slept for that long before! I was concerned incase I wouldn’t sleep through the night but I did!

I wasn’t able to go back to work for the rest of the week. I felt not only as though I had been hit by a steam train but as though I had been through ten rounds with Mike Tyson!

 

Another good image to show how I felt for the rest of the week is this one:

I not only felt exhausted from how the steroids were making me feel but because I didn’t listen to my body & rest!

Lesson learnt!

Never take steroids and continue to work!

Take time out and do not ignore what your body is telling you!

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15th Instalment: That’s That Then! P2

Thankyou text

 

 

 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?
fatigue
loss of vision in one eye
blurred or double vision
dragging a foot
weakness of limbs
reduced coordination
balance problems
numbness, pins and needles, burning sensations
What 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…

  1. I had to advise DVLA of my diagnosis
  2. I wasn’t allowed to drive until my vision returned to normal
  3. I should get in touch with
  4. 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!

14th Instalment: That’s that then! P1

 

Thankyou text

 

 

 

11th August 2010….

Please note that i don’t remember all of this day exactly, its hard to remember everything when you are being bombarded with so much information!

Some of what I write may not be exact but I will try my best to get it right! It is too hard for my partner to have to remember all of these events and I don’t like to ask other people so I’ll plod along as best I can!

I sat waiting with my partner and my Dad, waiting for someone to call my name, waiting to be given an answer to the biggest question I had hanging over my head!

None of us spoke, we just sat, watching, watching all the other people who sat waiting, they were also waiting for answers. Everyone’s answer would be different. We weren’t all there for the same reason.

I was in my own world again when my Partner very gently put her hand on my knee and said ‘its time’ My heart sank

I looked up and a nurse called my name for the second time.

I stood up & walked towards her, she had a very gentle voice and a kind forgiving face. I had a nice feeling about this lady.

I noticed how I felt calmer, I felt at ease.

Why did I feel like this now when only moments before I felt like my heart was going to pop out of my chest it was beating that hard!

 

I followed the nurse into a consulting room where another woman sat in a chair behind what looked like a giant desk! When I was in the room and sat in a chair next to the desk I realised that it wasn’t the desk that was huge, it was the woman that was tiny!

She introduced herself as one of the Drs on the neurology team (I don’t remember her name!)

 

She went through some of my medical notes with me and explained that she would be doing some neurological tests and asked me to make my way to the bed and sit on the side.

The lady Dr stood up and started to walk towards me, my goodness she was tiny in stature but huge in width! She was pregnant and looked as though she hadn’t got long left until due date!

 

I sat there in my own world again! I do this often! I often take myself into dream world when I should actually be concentrating on what I am being asked or told to do.

I just sat there on the side of the examining bed with my feet dangling just thinking do I take these trainers off? I couldn’t remember if I was asked to!

How odd is it that I can remember useless facts like this but not all of the tests that were done!

 

When the Dr got to me she started the tests by checking my vision, I was still blind in my periphery vision, I think I had started to get used to it if that was at all possible!

The Dr asked me to follow her finger with my eyes but to keep my head still, as I did this and she moved her finger to my right periphery, I lost site of her finger. She asked me to continue to look there and not move my eyes. Well, this seemed to be impossible! Every time I strained to keep my eye still it pulled back to the left! This was an extremely strange sensation! It felt so odd, as though I had no control whatsoever. I started to get upset so the Dr went onto a different test.

It seems such a blur all the tests she did and unfortunately i just can’t remember them all!

 

We moved to a different room when that Dr had finished doing her tests, again the friendly nurse followed us all into the room and sat at the end of the bed.

There was a happy looking Dr sitting at a desk, he stood and introduced himself ‘Dr Shehu’ I shook his hand and sat down next to the desk.

He sat and looked through my notes and asked me to explain to him my symptoms, I told him exactly what was written in my notes, I lost vision in my right eye!

He asked me to take off my shoes and socks and to lay on the bed. At this point all I could think of was ‘that’ appointment with the neurosurgeon! This time I didn’t have to strip down to my underwear, he draw the curtain around us and that lovely friendly nurse was right at the end of the bed!

He continued with even more tests, some which the pregnant Dr had already done and some new ones.

The sensory test is one that I remember, it involved the testing of the main parts of my body – face, trunk, arms, and legs – for differences in sensation. Sensitivity to touch was tested by the Dr simply by touching my skin and sensitivity to pain was tested with a pinprick. I was surprised with how little I could feel! It wasn’t something that I was aware of! After all I was here because I had lost sight in my right eye, right?

 

Once all the tests were complete Dr Shehu then handed me over to the friendly nurse that had been following us around….

 

To be continued…..