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Foot drop

Hi, as a newbie here could people tell me if having foot drop is a requirement to being diagnosed with MS?

I have a lot of MS symptoms and am awaiting an appointment to see a neurologist. I have trigeminal neuralgia, which was diagnosed after a brain scan earlier this year. No lesions showed up but I have just recently had an intense amount of pins and needles in both feet and hands with tingling/twitching in my face and eye. This has been going on for the past 4 or 5 weeks now and wondered if this would be classed as a symptom/relapse?

I have had the awful chest crush/ms hug several times over a period of years, plus l’hermitte’s sign, which I only recently realised was what it was called plus lots of other symptoms. Jerking, twitching, altered sensations, brain fog, losing words or my way in a sentence, etc etc.

I also have complex regional pain syndrome.

Thank you for any help or advice. X

hi

i don’t know if foot drop is a requirement for a diagnosis but it is a very common symptom.

in preparation for your appointment with a neuro, make a list of all your symptoms in chronological order saying if they got worse/eased off; how long they lasted etc.

doesn’t matter if they sound weird, neuros are used to hearing about weird symptoms.

my neuro was pleased that i shared my experience so fully and he passed me onto an ms specialist who diagnosed me.

of course, it may not be ms but your neuro will explore other possibilities.

carole x

No, not a requirement. The criteria for diagnosis is called the McDonald Criteria. Here’s the details on the BMJ website:

https://www.bmj.com/content/suppl/2006/03/02/332.7540.525.DC1

Good luck

Sonia x

Hi,

thank you for your reply. I will make a list but afraid that the list will be very long as thinking back over the years I have had loads of strange symptoms, some of which I ignored, and only now have started to put 2 and 2 together. I don’t know what is related to my other conditions or what could possibly be ms. I normally put all of these strange things down to my Complex Regional Pain Syndrome but maybe I have been wrong. Do you know how long it takes to get a neurologist appointment? I was initially referred about 6 weeks ago but then my doctor said she was trying to get me seen sooner, that was about 3 weeks ago.

kind regards, Ang x

Hi Sonia,

thank you for your reply. I will just have to wait until I see the neuro and maybe have another MRI and lumbar puncture! It’s the waiting that gets you. In the meantime having all these symptoms! Do I tell the doctor every time I get a new symptom or just wait to let the neuro know?

Kind regards, Ang x

Hi

If you go back as far as possible, make a timeline of all the symptoms you’ve had that you think are maybe all connected. Take note of how long symptoms lasted, whether they completely went away or if you continue to have trouble from the same symptom.

It’s probably not necessary to see a doctor for every new thing that happens before you see the neurologist, unless that is, anything is disabling or extremely painful, or in any other way really worrying. And don’t forget that not everything you experience will be due to the same cause. So see a doctor for anything really out of the ordinary or that scares you.

Sonia is absolutely right, the McDonald Criteria is what MS diagnosis is based on. As Carole said, many people do have foot-drop, but by no means everyone with MS. The reason why (I think) it’s common, is the length of the nerves that affect the way you pick up your feet. So there is no end of places where MS lesions can affect the particular nerve that makes ones foot pick up. For a similar reason, I suspect so many peoples hands are affected in one way or another. Maybe numbness, tingling, pins and needles, extreme cold, the list goes on and on.

Dont forget though Ang, that there are many other diagnoses that share symptoms with MS. So what you might find fits the MS diagnosis exactly, could actually be caused by something else. All I mean by this is that you shouldn’t expect that you definitely will get an MS diagnosis. It could be something else.

Best of luck. I hope the appointment comes soon. Obviously, waiting times differs from area to area.

Sue

Read all the comments. It does take a while to see a neurologist, I am seeing mine tomorrow, not seen her for over 18 months, they are very busy because of the number of cases. So make a good list and use your time effectively as time is at a premium. I had foot drop for over 5 years, my left foot catches the floor when I walk, unfortunately I have to use a stroller for short distances 50 metres, over that it is the scooter. I have bought 2 contraptions over the years one using a rubber which lifts your foot, ineffective £50 and the other £150 which uses a nylon rope which you can stretch using a wheel to lift your foot which worked but the strain on my ankle was too severe after 30 minutes. I am going to ask my neuro if she would refer me for a FES functional electrical stimulator, I know they can cost over £5000 if I have to pay. Has anyone used one of these for foot drop. My list also covers: Can I have stem cells treatment which the answer will be no, you are not bad enough. Is Ocrevus better than Tecfidera which I am on which is fine but my condition has gone slightly worst over the last 3 years used to walk 200 metres with stroller. Is Metformin and Clemastine any use for me. Will also do the 9 hole peg test and 25 metre walk. That is all I can think of in my 30 minutes slot. Regards and Happy Christmas

Hi Bertie

To answer some of your questions in advance of your neurology appointment.

First, foot drop, I’ve tried many different things for foot drop, the Foot-Up costs about £50 and is probably what you’ve already tried. I’ve also got a Boxia, which is similar to a Foot-Up (in cost as well as action), but probably works a bit better, you do need the right shoes for it. FES definitely works better, so long as you are in an area where the CCG (Clinical Commissioning Group, replaced the old Primary Care Trusts) will fund it, some will and others just don’t, not for MS anyway. I’m in Coastal West Sussex CCG and they won’t pay for it. I have privately funded it. Odstock in Salisbury is probably the cheapest way of self funding and I believe is probably the one most NHS areas prefer to pay for. It costs about £1500 initially, then a further £300 per year (there’s a complicated method whereby you pay just for appointments). Essentially, you don’t own the equipment, the company do, and if you stop attending appointments, they will take back the equipment. It does work though.

Interestingly, for some very bizarre reason, my foot-drop is marginally improved just lately. After 7 years of total uselessness. My rehab neuro has never seen anyone’s foot-drop improve like this. It’s not sufficient to actually walk without an aid, but I’m planning on doing some exercises, to see if I can make it better still (see https://www.saebo.com/get-back-feet-exercises-foot-drop/ for info on foot-drop and exercises to maybe help).

Re Ocrevus versus Tecfidera, it will be interesting to know what your neurologist thinks. As far as the MS Trust Decision Aid shows (https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ) they have roughly the same relapse reduction rate. But it may be that Ocrevus is better than Tecfidera for some aspects of your MS.

Let us know how you get on.

Sue

Sue

Thanks for all that detailed information, I will let you know how I went on.

Also really pleased that your foot drop has improved, that has really cheered me up because it gives me some hope.

Will now have an extra beer watching the footy.

Happy Bertie

Thank you, Sue.

Your replies always include sound advice. My list will be endless and I can think of loads of symptoms from way back to my 20s, I am 61 now!

It was only last year that I had my latest ECG due to the pressure around my chest and back, which I now think was an ms hug. I have had several episodes of these over the years, and at least 3 ECGs. Nothing ever found. I’ve had tubes down my throat for swallowing problems and seen speech therapists, I have had problems walking after sitting for a while, where my legs didn’t want to work and I blamed ‘old age’, I get really cold extremities, permanent pins and needles in both hands and feet with the tingling feeling going right up my entire right leg, etc, etc. The mind fog is very frustrating, losing a word or even the thread of what I was going to say makes me feel so stupid. I used to be so eloquent! Now my Family sometimes laugh at me for forgetting words, getting mixed up or going quiet while my brain searches for a word.

I don’t want ms, it just seems to me that I have most of the symptoms but my case is complex as I have several other conditions, of which some are rare and poorly understood, so it’s easy to blame them for everything.

I haven’t told my grown-up children about my concerns as I am sure they will just think that I am being over dramatic. I have had breast cancer, have osteoporosis, trigeminal neuralgia, TMJ, fibromyalgia, complex regional pain syndrome, occipital neuralgia, benign brain tumour (which apparently won’t cause any symptoms) etc. So, as you can see these could be blamed for everything, but the constant pins and needles and tingling/twitching face are new. I have been suffering severe fatigue this year, have had lots more pain etc.

I will try to do a timeline with my symptoms. At least the doctor thinks they would be an indicator of ms, if it weren’t for my other conditions. I had an MRI done in 2009 and told that I had a brain lesion but nothing was followed up. In 2012 ms was hinted at again but still no follow up. I had never done any research into it either so just dismissed it. I used to be a carer for a lady with ms and she was paralysed from the neck down, that was my only experience of the condition.

Anyway, thank you again for your advice.

kind regards, Ang x

Hi Bertie,

Just to wish you good luck with your appointment tomorrow! Hope they can help you with your foot drop.

kind regards, Ang x

I think not losing hope is a good thing. But you shouldn’t be discouraged if your foot-drop doesn’t improve. Mine has amazed the therapist at Odstock and my Rehab doctor alike. It’s not supposed to happen. I’m going to exercise it to see if I can actually improve it any more, but am expecting that one day I’ll wake up and it’ll be back to normal, ie useless.

Let us know what your neurologist says anyway.

Sue

I wear one of these for foot drop

Helps loads

Hi

Sue, Ang, Carole, Sonia (dancer) and Craig (judge)

My appointment with my neurologist when incredibly well.

Took my WISH list.

As Strickly Come Dancing straight 10, 10 , 10 ,10.

Thanks for all the positives vibes.

Will keep you informed over the next 4 weeks if it all comes to fruition, will be happy with just two 10s do not want to be greedy

Bert

1 Like

Hi Craig Had a look at this on the website, did not know Amazon sold them. Bought 2 similar types but they hurts me at the back of the leg after about 30 minutes and have to take it off. See privately a Neuro Physio every 2 weeks who encourages me to use the expensive one £155, as it does work but it hurts. Do you just wear it or do you put extra padding/support at the back of your leg. Craig how long do you wear if for each day and does it not hurt you. Thanks Bert

Hi Bertie

Have a look at the Ossur website, there is more information on there as to the use of the Foot-up: https://www.ossur.com/injury-solutions/products/foot-and-ankle/ankle-foot-orthosis/foot-up There is a link to their web shop, or of course you can buy them from Amazon. Another very similar product is the Boxia: http://www.orliman.com/en/product/calf-support-for-the-boxia-drop-foot-ankle-brace/ again, available on Amazon (just like everything in the world, I bet if you wanted to buy a baby elephant you’d find one on there!).

Sue

Hi Bert

Most days it is on 10-12 hours pain free, have to wear lace up shoes with it and they are available through the NHS Orthotics department. I wear it over the top of socks and it fine, If I get the correct size and they are made small.

After shelling out £55 from a chiropodist she let slip that she got it from Amazon…

Hi Bertie,

Wow, it sounds like you have hit the jackpot! Fingers crossed you get everything you wanted.

Hope it all works out for you x

Bertie, Years ago, I successfully used the foot up. Then as my foot drop deteriorated, the foot up wasn’t enough for me. I’ve tried the FES three different times. Each time, it did nothing for me. I have used a SAFO for over 10 years now. See https://www.dorset-ortho.com/en/patient-services/safo/ Hopefully you find a successful solution for you. Derek

Hello Derek

Not seen this before, they have a clinic in North West which is fairly close to me, so will pursue, if other options fail.

First I am having another head and spine scan tomorrow Sunday

Then, hopefully Ocrevus for MS, then a new drug for me to try to stop the stiffness in my leg and then trial of FES.

Busy period but if I pursue it, will let you know, in a couple of months

Thank you

Bertie