Me, My MS and I


Foot Up Orthosis For Foot Drop

Many people are given a Functional Electrical Stimulator (FES) to help with foot drop by stimulating the muscles in the leg with each step to lift the toes and aid walking. Some find this an uncomfortable device to use, and it can be a little inconvenient. I was recently shown Foot Up by someone with foot drop. It’s a discreet and comfortable orthosis for use by those with foot drop and supports the foot from the moment it’s lifted. I thought I’d post the link here as it’s a great alternative to an FES. There are versions to be worn with shoes and without shoes, and it’s easy to swap between footwear. Foot Up

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Feeling Dreadful But Trying To Battle On

Day 3 of the Methylpred. and feeling pretty dang crappy. Never taken oral steroids for my MS before, but I’m sure it’s all pretty normal. The tablets taste absolutely foul – 5 all at one go – and I have a horrible bitter and metallic taste in my mouth constantly. Feel generally in poor health in addition to the relapse nonsense. Just 2 more doses to go, woohoo! Keeping an eye out for oral thrush, which my nurse warned me about – fingers crossed I don’t get it! Unfortunately, symptoms haven’t lessened any yet, but perhaps I’m looking for too much too soon. I’d read steroids generally increase appetite, but they’ve killed mine unfortunately.

As far as my symptoms go, walking is still mighty difficult and my legs are very wobbly. Knee buckling has gotten worse with this relapse. The FES has made a difference though, and I’m not worrying so much about my toes catching and falling over. Fatigue is very bad at the moment, and it’s almost impossible to work through – it’s as though a fog comes over me and I can barely think or function. Due to the nature of my work, I can take my time with tasks though and have a notebook I use to help me remember tasks to do. The nerve pain shooting down my right arm and into my fingers is still very painful and intermittent and I’m continuing to run to the loo frequently. Balance is still off and drifting a little as I walk (thinking of getting an ‘I’m not drunk’ badge!). ‘Phantom pain’ as I refer to it, is driving me berserk! My body hurts, rather badly, in areas and it’s frustrating, especially when I can’t take Ibuprofen as I’m on steroids. Cognitive abilities remain reduced, and I’m getting confused rather easily. I managed to say ‘England’ instead of ‘Edinburgh’ and was convinced I’d said Edinburgh! My speech isn’t the best either – having to enunciate my words more in order to speak clearly. For someone with a high IQ, it’s extremely frustrating and a little distressing if I’m honest, but I’ve been referred to the neuropsychologist the first week in December to test my cognitive functions and tackle any areas affected, and finding strategies to help me cope with the changes.

Had a bladder scan last night and the news wasn’t great: my bladder contained 171ml of urine, and after ‘piddling’ (as my nurse calls it) I still had 126ml in my bladder. Anything over 100ml left isn’t terribly good. I’ve to go back next Thursday for another scan in case it’s my relapse making things worse. If I still retain over 100ml after ‘piddling’, I’ll be referred to the continence service and intermittent self catheterisation may be needed. Oh, the joys! I take a cranberry supplement every day and do all I can to look after my bladder as I’m very prone to cystitis and had an awful urinary tract infection last year. Still, I’ll manage whatever my MS throws at me : )

Rather impatient to recommence the LDN once I’ve completed the steroid course, and this might improve my symptoms. And I have the Copaxone to start probably in January sometime too. Looking forward to both.

Finding it a little difficult to keep my spirits up – took me 40 minutes to walk to the bank and back at lunch time today, which usually takes 10 minutes at the most each way. Have to leave the flat earlier in the morning to get to work on time too, although thankfully I don’t have a long walk. Amazed I’m not off sick from work, but I think I’d get down if I was in the flat all day. It’s far from easy – extremely difficult in fact – but I battle on. I generally catch a taxi home as I’m worse by the end of the day. Walking, severe fatigue and cognitive functions are making it difficult, but luckily I have a great boss who’s very understanding, especially with all the time off I’ve had for hospital appointments recently. Not physically capable of taking part in my tai chi class tonight, so didn’t go, which I’m disappointed about, but sometimes one has to recognise when not to push too hard.

Down beat as this post may sound, it’s not all bad; I’m managing to keep my chin up and I’m determined to fight this as much as I can and keep going. It’s extremely difficult, but I do like a challenge! ; )

FES

Still feeling pretty awful at the moment, curled up in my PJs with my duvet. Collected my steroid rx from my GP today but no pharmacies stock it! Wasn’t a terribly happy bunny. Pharmacist at Boots was really helpful and ordered it, so will be available 0930 / 1000 tomorrow. Have to take a ‘gastric protector’ for a fortnight too to protect from gastritis and gastric ulcers. Oh, the joys! On 500mg of steroids orally per day for 5 days; apparently that’s quite a high dose, but I have no idea.

Now to explain my leg stimulator: I’ve now discovered it’s called FES (functional electrical stimulation) – thanks Squiffs : ) The MS Trust has a great factsheet on it which can explain better than I can – http://www.mstrust.org.uk/information/publications/factsheets/fes.jsp A quick cut and paste,

“In MS, damage to the nerves in the central nervous system prevents or interrupts messages passing to or from the brain via the spinal cord. One of the problems this poor transmission of messages can cause is dropped foot. Dropped foot is the inability to lift the foot and toes when swinging the leg forward during walking. This causes the toes to catch or the foot to drag on the ground, which can lead to falls and a loss of confidence.

Some people will compensate for the effects of dropped foot by altering the way that they walk. In time this can lead to further problems such as pain in the hips or lower back, a tightening of muscles and poor balance.

FES compensates for the interrupted messages from the brain by applying an external stimulus to nerves. Self-adhesive electrodes are placed on the leg and connected to a small stimulator, which is about the size of a pack of cards and can be worn on the belt or carried in a pocket. Small electrical impulses are used to excite the nerves that supply affected muscles producing basic but useful movement.

The impulse is activated by a pressure sensitive switch in the shoe, causing the foot to tilt to the correct angle when lifted. When the foot is placed on the ground again, pressure is reapplied to the switch and the stimulation ceases.”


The FES is working pretty well and I’ve been experimenting with the intensity of the stimulation to find which level moves my foot best. Feeling more confident walking but it’s still a chore. I’ve also gotten used to the sensation as the ‘shock’ is delivered, which has helped. A little unsettling at first, but I’m surprised how quickly I’ve become accustomed to it. The only downside is the control box beeps when I turn it on and off, which attracts the occassional look, but I don’t really care as it helps me. I’m sure I’ll find a way to deactivate the beeps ; ) My papa was an engineer (long standing family joke). Cognitive abilities are still impaired by the relapse at the moment, muscle spasms hurt like hell and the fatigue is killer, but keeping positive.

Bought a TENS machine the other day to help the muscle spasms and it’s great! Doesn’t completely stop them but does help reduce the pain and intensity. Got it from Lloyds Pharmacy – £29.99 for a dual channel heating and massaging unit.

Had my last dose of LDN last night until after the steroids as I start them tomorrow : ( Will start again as soon as the course is finished. Off for a bladder scan on Wednesday, fingers crossed they can do something to help. Needing the loo every 20 minutes is wearing thin now!

Off to sleep now. Will keep you posted when I’m up to it.

Bionic Woman

Was at the specialist today and he’s confirmed what I fearded – I’m currently having a relapse. It started a few days ago in earnest I think, before my LDN consultation and starting LDN, but I was hoping it was just a few ‘bad days’. In hindsight (20:20 as always) I think that was wishful thinking. Walking has been pretty bad today and having trouble lifting my left foot off of the ground when walking and as a result my toes have been dragging. The physio gave me a great electric muscle stimulator to help with this – two electrodes attached to different points on my leg and a pressure switch under my heel meaning and as soon as I lift my heel off the floor the little box I wear round my waist gives my nerves a little ‘shock’ which stimulates them and moves my foot and my toes come off the ground. It’s a very strange sensation to get used to and not the most comfortable (although not painful) and it’s bizarre having something else control my foot, but it’s helped my walking a lot today. Hopefully I won’t need it for too long. Although it is rather cool and makes me feel a little like the bionic woman. Again, childish as usual ; )

Had to get my blood taken again today unfortunately. Grrrrr. Perhaps my new Twitter name should be pincushion instead of miss! On the plus side, when I was weighed, I’d lost over half a stone since I last weighed myself a month or so ago. Quite a few people have commented on it lately but I didn’t think I’d lost that much.

There was talk of putting me on steroids next week when blood and urine tests come back to help with the relapse as I’m finding walking difficult and I’m worried my legs will buckle underneath me or I’ll fall. Needing the loo every 20 minutes and bad legs don’t provide for a terribly fun day. I’ve also been advised to start DMT (disease modifying treatment) as the number of relapses and frequency now suggest my MS has reached the stage where it requires this. Everyone has their own opinions on drugs and treatements, but for me personally I have LDN and its possibilities and feel Copaxone may complement it, but will speak to Dr T before going ahead. I’ve ruled out the interferons as the side effect lists put me off completely and I don’t feel they’re the best way to treat MS.

Not feeling terribly wonderful today so a short post, of which you’re no doubt thankful. LDN dose again tonight 🙂 Will keep you posted.


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