Hi all I feel like I am always on here now. I just seemed to be coming out of my optic neuritis and coming to terms with everything and deciding life may not be as bad as I thought and now i have developed a foot drop. Has anyone else has this? How was it treated? Doesn’t ever get better… I Went from being well a year ago to being so unwell. It’s awful! I was just thinking about trying baby no 2 before my dieseaee gets any worse when this hits out of the blue. Feeling so frustrated. Love Lilly xxx
Hi Lilly I can totally relate to you…I’m just starting to get over a bout of ON and have realised I had it 4 yrs ago before I was diagnosed never went to docs it just resolved…as for drop foot mine was quite severe I had no movement in my foot at all couldn’t move my toes and could barely walk had a leg splint to wear which helped me falling over! I had that in April 2012 it was really awful but it did resolve although it seemed a slow process had physio and some steroids…I am still left with some residual damage and can’t walk long distances and it plays up when I overdo it much is 100 times better than it was!..so hopefully yours will too improve you think at the time it’s never gonna but it does…just take it easy and try to see a physio as I think that helps a lot also ask about a FES I have one but to be honest don’t use if as much as I should!..if you need to chat feel free to pm me if I can give you any more advice although we’re all different…good luck and hope it resolves for you soon…Emma x
Amongst other things, I’ve had ‘drop foot’ for over 4 years now, and don’t expect it to ever get better.
Over that time, I’ve tried a ‘foot-up’ device, FES (still currently use) and a trial of Fampyra (…the ‘walking drug’). Foot still catches on the ground quite often and frequently it’s my walking-stick that stop me taking a tumble.
Thousands of people with MS get ‘drop-foot’ - it’s a very popular symptom …but I can’t think why?!!
Hi Lilly - I feel for you - I too went from being so well one year (13 months) ago to being plagued by issues. I presented with a numb left leg which progressed to foot drop so I couldn’t walk properly for a few weeks then it just got better - no steroids (mainly because I was very down at the time and potentially newly diagnosed and frankly the thought of steroids scared me) but mine improved. I was not left with any issues from the foot drop but residual sensory and tightening issues with the leg which aren’t that bad but as I’ve just found out seem to flare up with infections. Some people on here are much better informed than me regarding treatments etc and I’m sure they’ll be able to advise you well. It’s a rollacoaster as I’m finding out - all I can advise is make sure your vitamin D and B12 are good as when they drop it can exacerbate issues and generally leave you tired and down. I got these addressed and it really helped. I’m at my wits end as I’m not sure if I’m relapsing or having a flare up due to having an ear infection (posted a couple of days ago) but I’m none the wiser. Easier said than done but keep your chin up, your foot drop will improve - do contact your MS nurse if you are lucky enough to have one or your neuro and they can ensure they start looking at treatment options. Big hugs Rosey xx
I don’t feel as unwell as I did when I got the ON. I felt really generally unwell that time 13 weeks ago and did until about 10 days ago. Now it’s more my foot is the problem and I feel “fairly normal”. Whatever that means nowadays. I just nearly broke my neck after standing up an my leg collapsed under me. thought my foot was gone asleep but it hasn’t woken up. I also have a numb chin and lower lip that seem to have started at same time but how can a numb chin and foot be related!!! I didn’t even tell anyone about the chin as it seems daft and its not affecting me like the foot is Did any of you have nerve conduction test done? What is it like?
OK, here comes a bucket of cold water …
I have foot drop. I need two sticks and an FES to walk. Without them, my foot drags just at the point where my weight should be going onto it. I have had a few falls (one serious) and a lot of near misses.
Now, you have a new infant in your arms - you take one step and the foot drags - you are now falling - you will try to save the infant at any cost to yourself - you do some serious damage to yourself. Who will look after the infant?
Of course, it does not have to be that bad. What you do have to do is think about how you will cope. When you can figure that out, then try for No 2 if it still seems like a god idea.
Lilly… Geoff has been very blunt with you…but I would call it “tough love”. Before became unwell I was earning a huge amount of money and at the top of my game. My diagnosis started with transverse myelitis … Cause to be determined. 2 yearsa later I am struggling to work 16 hours a week and am not strong enough to care for my 3 year old grandson alone. I saw a psycologist who felt I had not accepted a prognosis of a chronic lifelong illness…and promptly had another relapse. I was so very ill again and I’ve accepted now that the life I had before is gone, and I have to find new dreams and challenges that fit my health. My advice is to try and find a new normal, awhich is not easy and instead of trying to continue on the path that you were on… Open your mind to a new path… And a path that enables you some lattitude physically. All my love and best wishes Gill
Thanks for all the help. I did say I was thinking about trying for number 2 before this happened. I didn’t say I was still thinking about it. I was only wondering about the foot drop and looking for advice as the doctor yesterday didn’t say much … Just he wanted nerve tests which sound painful. I’m new to all of this and was wondering if someone who had been through all this already could help me!
Hi Gill - thanks for putting Geoff’s comment in perspective as it stung for sure. I am already living with another chronic condition and came through a life threatening illness in 2007/2008. I am still only 30. I can accept this and modify my life but the uncertainty is so hard. I thought I’d never even have one child after my previous illness so she is so special but I always wanted 4 kids. Now I may have to be grateful for what I have but I did speak to my Obs from last year who said if I’m going to have another I need to try now and not in a few years time if things get worse. It’s such a hard decision. This new symptom is horrible though.
I know sweetheart…I just developed foot drop myself and its just awful. I am going back to my neurophysio therapist who managed to snap me out of terror when all this first happened. She told me to work my butt off to regain all the function that I could between relapses…so I lost as little function long term as possible…and she was right. I’m 45 and finding acceptance terribly hard. I am so grateful that its me facing this and not my daughters (23 and 19) who will want babies. So I can imagine how you feel Lilly with your plans and dreams now in question. I’m just bloody grateful to be able to leave the house again after being so ill, so other stuff seems less important. Anyhow, look around at all the beauty in your life and PM if you are lonely xx
It seems there’s not really a common cure for the foot-drop problem… it’s how I somehow got diagnosed! I visited an osteopath after I fell due to the foot-drop, she wrote to my GP and to cut a long story short, 3 months later I was diagnosed.
I’ve recently seen a physio, hopefully I’ll hear from her shortly about trying FES. I’d love to try Fampyra but it’s just too expensive right now. I also have to baclofen now to help calm the spasticity in my legs which makes it all worse
Good luck with whatever help you can get
Hi Lilly, I dont approve of Geoff’s negative comment at all! I have been told that foot drop that appears quickly will fade and go away. The foot drop that appears very slowly and gets progressively worse over a long time (as in progressive MS) is unfortunately there to stay. Basically if you have RRMS then this is a symptom which will probably vanish.
I don’t agree with the suggestion that Geoff was being negative …simply painting a picture of what could realistically happen in the worst case!! Something to keep in mind and be prepared for, just in case!!
Moyna, I think you’re absolutely spot-on that drop-foot occurs and lasts differently in RRMS and progresive MS.
Having had foot drop, and wearing a splint, for a few years, I started on Fampyra three months ago. Amongst other benefits, foot drop disappeared and only returns, slightly, when I’m tired.
I’ve had it for a while, one of the reasons I went to the Neuro. My right leg scuffs a fair bit and seems to have a mind of its own on occasions! Strangely enough I can run ok for a short distance, not sure why?
I’m a wee bit surprised that no one has mentioned a SAFO (Silicone Foot Ankle Orthosis). I’ve had one of these for 5 years and it’s contriubted greatly to helping keep me mobile. I tried the foot-up and the FES but they didn’t help at all. My foot drop seems quite bad (I’m not sure how you measure these things) but the SAFO, which is very simple to put on and no adjustments are necessary, and although it may not work for everyone, has done wonders for me.
I’m sorry if my comment came across as too hard - it’s just that with MS (and a few other things) you need to think everything through.
Like: I can’t get on a plane anymore (or a train, or a coach) so I can only go where I can drive. MS means (very often) more frequent trips to the loo - so any journey of more than an hour means planning very carefully. The same thing could apply during pregnancy as I recall.
Now, there are people in wheelchairs who want a child, go ahead and have one, cope, and bring up a well-adjusted young citizen. They have planned for every possibility, avoided all the dangers, and made it work. Failure to think things through can often end in disaster. (I used to lecture on this, and had a few real horror stories. Like, the programmers who change a few key functions in a commercial word processing program - with a result that crashed the phone system for nearly a fifth of America)
Do not assume that your dropped foot will go away. Maybe it will, maybe it won’t. Mine was permanent well before the question of a change from RRMS to SPMS came up. The neuros still have not decided on that one (and I am still waiting for the next appointment). Plan for the worst - and if you think that you can handle it, go for it.
Thanks everyone A little dose of reality and a little dose of hope is what I need… Equal measurements of each should keep me sane. I have an appointment for a nerve conduction test in a few weeks. Not sure what it will show or how it will help. My chin and lip are more numb today. I in all reality cannot contact neuro within the week with a different symptom. Just hope it doesn’t keep getting worse. Have a pain in my good leg/hip now from walking funny with my dead foot. I still don’t feel as unwell as the last relapse so don’t know if this is a relapse or not or what to call it. You are all so good and helpful. I would be lost without you. Love Lilly xxx
Hi Lily, sorry to hear you’re having such a hard time. I’ve had footdrop for years and wear an FES everyday, don’t know where I’d be without it. The FES means that I can walk much more normally and so I think it’s kept me walking for longer, all the right muscles are being exercised. I really think my life would be very different without it. When I had my daughter in 2001, pre-diagnosis, I damaged my pelvis (still debatable as to whether it was MS related) so spent a lot of her first year struggling to walk and in a lot of pain. When I got pregnant with my son the pain returned and I was on crutches for the whole pregnancy, he was born in 2004. I was diagnosed in 2007. My point is that I might have thought twice about a second pregnancy if I’d had the MS label but the whole pregnancy would have been the same. Does that make any sense? Bit early, sorry! Take care Becky x
Sorry, think my last post comes up as “anon”, pressed the button accidentally!