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Foot drop - An MS update

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Posted on Thu 07 December 2017

Foot drop. It's not some funky 30s dance, it's a "muscular weakness or paralysis that makes it difficult to lift the front part of your foot and toes". I sat down at my PC on Friday evening and when I got up to go to bed I kicked the floor and then I fell up the stairs. Why became obvious quite quickly. The front of my foot was dragging down slightly, not a lot but enough to catch. I tried sitting down and pulling the tops of my feet toward me, pivoting around the heel. The left foot was pulling noticeably less far. I rang the nurse team on Monday to tell them what was going on, I had a bit of a cold but as this was a brand new symptom I thought that I'd best tell them. Probably a good job that I did as they made me an emergency appointment to see my neurologist today. Don't panic though, I still seem to be able to ride a bike just fine.

The appointment

We chatted about what was going on and when I'd last had a relapse etc... and then got into examination. After a while of testing coordination, them (there was also a student doctor) wobbling my legs, hitting me with a reflex hammer thing, testing my balance and making my legs/feet do weird things by sharply moving them the neurologist decided that yes I have foot drop and yes it's because of MS. This means that it's officially a relapse and he wants to change my medication. He explained that men, and especially men with upper motor neurone issues (what i seem to have), as quite susceptible to disability issues further down the line. For this reason he wants to escalate my treatment to the next level to try to prevent/prolong this from happening.

He also offered me steroids and laid the pros and cons. The steroids are a very high dose but only five days worth. The idea behind them is that they decrease the amount of time until the body begins recovery, but once recovery has begun they don't accelerate the actual recovery process. The list of side effects that he reeled off were not great; they include delights such as stomach issues, changes in mood, changes in personality (seealso, roid rage), and weakening of the bones(!). As this foot drop isn't much affecting my day to day life it didn't take me long to say no to them.

The new meds

He gave me a choice of two medications to go with; Fingolimod or Cladribine. These are both tablet based (woohoo!).

Fingolimod is a tablet once a day and has been in use for a while and comes with quite a range of side effects that he told me about. There are quite a few so check out the link if you want to know them, the biggy is that the first dose has to be taken in the hospital so that they can monitor you, for at least six hours, as it can cause the heart beat to slow or become irrelegular. A couple of people in the states died the day after their first dose so they're a bit more careful now. Oh, it also has the risk of PML but that's nothing new to me.


Cladribine was approved by NICE yesterday! It's a tablet taken 5 days in the first and second months and then not at all until the following year where it's the same again. This drug has been around for ages. It used to be used for MS and for chemotherapy but via an IV. He didn't mention many side effects but that link lists a few, the salient points being one in fifty people getting shingles and that general risk of infection is higher. He also mentioned that this was actually the first medication for MS to be made into a tablet but there was a cancer scare. A study showed an increased rate of cancer but it turned out that the control rate had a 0 rate which almost never happens. Since that study people who had already taken the drug have been monitored and shown to have no increased risk.

I'm going for Cladribine.

Legs otherwise

Right leg is definitely weak. In the "resist me as I push down on your leg" test it does not do well, like a knife through butter is near the level of resistance. The left leg is a lot better which makes left foot drop a bit of an arse. I bought a hiking stick which helps a lot with longer distance, although not long distance - things get wobbly. Not sure how that'll be now. Going to try riding some decent distance on a normal bike this weekend, the ebike keeps breaking so I'm thinking of selling it if I can manage without.

Bladder

It's not great but is manageable (much weeing in laybys when driving). Medication might be helping, I don't want to stop taking it to find out!

Diet

I've been mostly sticking to the overcomingms diet. The past couple of weeks I've eaten eggs a couple of times and last week went off track a bit. It's easy to make correlations though - I've also been riding my bike less so maybe that's why. I think it's most likely because of the cold and/or just one of those things. I'm going to stick with the diet at home (not least because it feels weird not to now) although I'll eat more eggs, life without eggs is less good. When I'm away from home I'll eat (ideally lean - game or white) meat if it's less hassle (like if family or friends are cooking) or there's no options on the menu that I like that aren't meat. I'm going to keep avoiding dairy where I can (I'm not obssessive about it, I will sometimes eat normal cake) because a lot of people report (anecdotal) evidence on that one. I'm also going to keep avoid salt as much as possible, that one definitely is evidence based.


So all in things are pretty good, just got to remember about my foot when I walk up stairs - until it recovers.

Tags : multiple-sclerosis /