Relapse spotting

Well, I guess this goes to show how difficult it can be to spot a relapse, sometimes.

I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the ‘cactus gloves’ I am wearing may be related to coming off Gabapentin.

I am to “take it easy and see how I get on”

I thought I would make a list of things that had flared up over the last month or so:

  • optic neuritis – lights in my vision (currently) and pain when moving my eyes (last Friday to Sunday)
  • stiff heavy legs – currently finding it difficult to walk (up hills especially)
  • foot switching itself on and off repeatedly – hot then normal then hot etc. (before Christmas)
  • the same foot going excessively cold
  • occasional tinnitus – right ear (since early December)
  • dizziness – no vertigo head rush, yet, but I lost my balance a couple of times today and either bumped into things or nearly fell over
  • my head has gone tingly a couple of times
  • I felt very lethargic on a number of occasions since the New Year, but nothing I would class as chronic fatigue
  • an increase in the amount of insects who seem to want to escape from my feet

I can go to hospital to be checked over and prescribed more steroids if I need them. I don’t really want to do that, though. H also advised that I take some time off if I feel any more crap than I do now, and I don’t really see that happening either.

Strangely, as I typed this, I experienced a tightness across my chest that may or may not be the “MS hug.”


Life with MS – Part Two – Medication

I have been dosed up this year, like I have never been dosed up before.

I mentioned in an earlier post that having MS is a little bit like having an uninvited monster following you round everywhere (mine has been clinging onto my right leg all morning). In order to stop the monster from suddenly flipping and getting all aggressive on me, I need to give it some drugs. The main ones are:

The first drug prescribed was a massive one-off dose of steroids (methyl prednisolone). To give you an idea – patients with severe asthma are sometimes prescribed approximately 40mg of this steroid every day to combat whatever it needs to combat for them. I took 500mg per day for 4 days. This was in order to fight the inflammation in my brain and give my body the kick start it needed to repair the myelin damage in my brain and spinal cord.
Benefits: it cleared up a non-MS related dodgy knee
Side effects: bad indigestion for a week, nasty metallic taste in my mouth, short temper (just ask my family), increased appetite (despite the heartburn) and therefore weight gain.

This is an anti-convulsant normally given to epileptics, but can apparently help nerve pain in MS patients. I take it for the pins and needles, the ants under my skin and any other nerve-related pain that I am experiencing. I think it was supposed to help my eye problems as well. I am gradually working my way up to the full dose of these (900mg a day) which I should be on by Christmas – I am currently on 600mg per day.
Benefits: I am not up to full dose yet and it’s still early days but I get the odd window of normal sensation in my hands every now and then and my L’Hermitte’s sign has cleared up
Side effects: Drowsiness – I feel very sleepy in the evening and sometimes during the day. Hallucinations – I am seeing quite a lot of things that aren’t there – I saw someone standing in a corridor at work the other day staring at me, when I looked again it was a filing cabinet – along with movement glimpsed out of the corner of my eye this is getting to be a fairly frequent occurence.

Beta Interferon:
I inject this under my skin three times a week (Mon, Weds, Fri). I am currently on a 22 microgram dose which is increasing to the full dose tonight (44 micrograms). The purpose of this is to interfere with and suppress my body’s auto-immune system to stop it attacking the myelin around my nerve cells.
Benefits: supposed to increase the time between relapses and make each relapse less severe. It is too early to tell with me, but I’m glad I’m on it.
Side effects: Not up to the full dose until this evening which is when the fun supposedly starts, but I have already had achey muscles and hot flushes. I inject before bedtime so that I can sleep through any nastiness but I can feel a bit crappy on Tuesday, Thursday and Saturday mornings (aches and hot sweats). The injection sometimes leaves a bruise too.

Because of my suppressed immune system I have already had my flu jab, and I am expecting to have jabs for meningitis and something else (I can’t remember what).

Omega 3 for vegans and vegetarians:
I made a diary entry, just over a year ago where I equated taking Omega 3 with improved cognitive performance. I noted that I was more able to “think on my feet” and wasn’t forgetting as much stuff. I think it probably co-incided with the start of a remission period, but I reckon it’s worth a shot, so I have started taking it again.

Ibuprofen / Paracetamol:
to combat the effects of the Beta Interferon.

Of the drugs above, I may take the steroids again next year at some point, depending on my symptoms and the Gabapentin is under review. It is a “dirty” drug apparently so side effects are quite common. If my body gets used to it, fine, but there are other drugs I could try in it’s stead.