The other week I experienced my first intravenous (IV) Steroid Infusion.
It has never been absolutely clear whether my MS is Relapsing Remitting (RRMS) or more Progressive in nature (PPMS). As my symptoms are fairly constant (Terrible Balance, Fatigue, Cognitive Dysfunction, Continence issues, and various Sensitivity problems) and these do not seem to fade away either partially or completely.
It was therefore questionable as to whether steroids would be a useful aid for me, to offer relief and to aid recovery. But, having experienced what could possibly be a 'flare up' or an 'episode' or an 'exacerbations' or a 'relapse' recently, with a distinct worsening of symptoms, it was suggested that I have a three-day Steroid Infusion to see if this helped to ease or lesson my symptoms at all. The general consensus of my MS Nurse, Neurologist and GP seemed to be that is was certainly worth a go.
So, I made an appointment to visit Ward1 at Leicester General Hospital on three consecutive days.
Firstly and most importantly, I have to say that the nurses and staff on Ward1 at Leicester General Hospital (LGH) could not have been nicer or lovelier or more splendid, and I really cannot stress that enough. They really were absolutely tremendous. I really cannot thank them enough. (Deanne, Keeley, Louise, Jane, Mariesa, Tracey, and Sue - sorry to the others whose names I didn't catch).
This was partly because the nurses treated me as someone with a genuine medical condition. I am rather used to the 'You don't look sick' mentality of so many people, people who perhaps unintentionally, but nonetheless, seem to look at me and feel entitled question the fact that I am ill; question that I do have a disease, a condition, an illness. That I am in constant pain. This lack of understanding is one of the worst aspects of living with an 'invisible illness' like MS.
And that is what it is, this is what it is, an 'Invisible Illness'. But people are not comfortable with something that they can't see; it is more difficult for them to understand. But the nurses didn't make me feel like this, didn't make me feel like a fraud, like I was faking my condition. This genuine understanding was perhaps the most kindness and caring I have received since being diagnosed over three years ago, and it made me feel accepted. They understood that I genuinely have a debilitating degenerative neurological condition. This was hugely reassuring, and something I can hardly even begin to thank the nurses of Ward1 LGH enough for.
The role of steroids for MS relapses has been accepted for many years. Most neurologists now prescribe steroids for acute relapses for people with relapsing-remitting MS (RRMS). And the evidence seems clear that they shorten recovery time from individual relapses.
It is not entirely clear how steroids work in aiding the recovery process, and I'm not a scientist or a medical personnel or practitioner, so I'm not going to even attempt to try to explain it, it has all got to do with chemicals, and this really is not my area of expertise. But, MRI studies have shown that steroids significantly decrease the amount of swelling around individual MS lesions, causing better nerve transmission through these affected areas. These effects are seen on MRI within hours of taking the first dose. In short then, steroids are found to be helpful.
Everyone reacts different to steroids and to steroid infusions. Some people experience benefits almost immediately, some people take a little longer for the medication to kick-in, and some people don't really experience a huge change or experience much benefit at all. But as we know with MS, 'No Two Are The Same' so it probably isn't altogether surprising that people respond differently.
And just as no two experiences of the condition are the same, and no two experiences of Steroids are the same, no two experiences of the side-effects of the drugs are the same either. Not everyone experiences side effects from IV steroid treatment, but as with most drug treatments there is the possibility of side-effects, and some of the most common side-effects of steroids are:
- Stomach irritation, such as indigestion and/or heartburn
- Increased energy
- Rapid heartbeat
- Flushing of the face, neck, or chest
- Feeling warm or cool
- Retaining fluid (avoid table salt and salty foods)
- Mood changes (euphoria, irritability, nervousness, restlessness) or mood swings
- Metallic taste in the mouth
To be honest I didn't really experience either benefit or side-effects, well, nothing obvious. I did experience Insomnia after day two, and on day three my temperature had increased, which for me was actually a blessing as I am always cold, but the nurses noticed that is was easier to take a sample of blood for testing as my hands were warmer.
I think for me, as much as the medication may or may not have helped my condition, I felt that I was given a huge boost, a really tremendous boost by the lovely and caring Nurses on Ward1. I felt that my welfare and well-being really was their primary concern. And who could ask for anything more? I certainly couldn't. Nothing was too much trouble. I was made to feel cared for. The standard of care from the Nurses really was fantastic, and that in itself was a real tonic.
And as I said before, I can hardly even begin to thank the nurses of Ward1 LGH enough. Thank You.