Last reply 1 month ago
Problem-question

Ok, now for the serious stuff. I was diagnosed with MS in 2013. “Demyelinizing (I made up that word, but I think you know what I mean) Illness” they called it for the first few years. From the very beginning I took it as MS. They used to say it’s not hereditary, but certainly, in my family, it is. My uncle (on my mother’s side) and my mom have it.
For the first 3 years I kept on living normally. But in 2016 I started experiencing difficulty moving my right leg. On that occasion, I was given antiinflammatories and those problems disappeared. However, a little later those problems came back, this time to stay. My main problem is that I spent years in the hands of neurologists that did nothing but by-the-book treatment (MRIs every few months, check-ups, rinse and repeat). I started with Rebif and it took a couple of years for them to change to Tecfidera (when I expressed increasing difficulty of movement with my right leg). In no session did any neurologist (I was seen by at least 4) mentioned any of the key terms related to this illness: spasticity, muscle shortening,…I had to figure all that out by myself so everything took longer. Therefore I changed hospitals from Tomelloso to Albacete, knowing they have an MS wing, so I hoped to get better doctors. But no luck: same indifference, same lack of information. I was going to change hospitals again,when all this coronavirus crisis happened.
So, where do I stand now? With my current neurologist mentioning the possibility to change to Ocreluzimab/Rituximab, but I’m still kept on standby. I practically drag my right leg (hopefully my left leg will stay strong) and I have no solution in sight. I can’t hide it from people anymore (only my closest friends, family and colleagues know the truth) and I see myself in a wheelchair, like my uncle and mum. As I said, I lead a simple life. I’d be happy if I could just somehow walk more or less normally. I know it all depends on my right leg’s strength, but I don’t know if I can even keep it, let alone increase it. Do you know anyone that has experienced something similar?And if there is something to do from the physical side? Thanks.

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stumbler
1 month ago

@crockett32 , Footdrop (https://www.mstrust.org.uk/a-z/foot-drop) is a common symptom of MS, which can cause walking difficulties.

If you can arrange a Neuro-physio assessment, they should be able to identify any muscle groups, which aren’t working properly. Simple exercises can be prescribed to try and address any specific weaknesses.


kelly_hornick
1 month ago

I have noticed exercise helps I have the same problem with my right leg. As long as I stay active it is easier to move. Although it’s frustrating when your leg doesn’t want to do what you want it to, but you have to keep active. I notice if I take a few days without doing my exercises, I am back to where I started and it’s really frustrating to keep starting all over again. (Exercises I do is yoga and Pilates, nothing high intensity. Sometimes weights and of course the exercises my physio gave me. Pm me if you want to know what some of those are. Might help you as well).


accesscrimea
1 month ago

Hi. We also live in Spain, in Malaga area. So far we have had an utter nightmare with the Spanish health system.

Have you found any silver linings with the health system, or has it been all bad?

We are new to MS, but are thinking we might need to move to Canada (wife’s home country) to get better health care in the long run.


crockett32
1 month ago

@stumbler: Is foot drop the same as clubfoot? Because I have a couple of orthesis for that, but they don’t help. Besides, my whole right leg is weaker and weaker. My problem is no doctor I saw ever said anything about foot drop (I don’t even know the word in Spanish). Club foot yes, but not foot drop. But no one mentioned any kind of test to find out more things and pin point the exact problem. It’s like I had to accept it and that’s it. Is it too late now to do something about it? Can I recover that strength?


crockett32
1 month ago

@kelly_hornick: I don’t exercise per se but, since I have dogs, I’ve always had to take them out 2-3 times a day,so I’m not completely sedentary. However, as time goes on I can do less and less with my right leg. I haven’t been able to run since 2016 and, as I said, now I practically drag my right leg. I’m going to do Pilates again from next week, but I’ll look into foot drop exercises as stumbler said. Thanks.


crockett32
1 month ago

@accesscrimea: The doctors I’ve had have been mostly bad, because I feel they haven’t done enough to point me in the right direction to help me with my problem. I don’t want them to solve everything, but at least tell me where to go or what to do. What’s the point of making an MS guide if you don’t tell patients about it and clarify some terms to improve that patient’s lifestyle?
It’s nice to have the option of going to Canada if you can’t find helpful doctors here. And with all this COVID craziness, things are worse than ever. I hope you are luckier in the future.


highlander
1 month ago

@crockett32
Hi I suffer with foot-drop as @stumbler has already mentioned click on the link below incase you missed it.
A neuro physio if available to you can give you assistance and direction on how to manage your foot-drop.
Your doctor may be able to arrange an appointment for you.
https://www.mstrust.org.uk/a-z/foot-drop


itsmewithms
1 month ago

Yes, “drop foot” is a real thing and likely what has been the most troublesome for me as it has impacted my gait enough through the years that it is likely the underlying issue that led to my hip replacement a couple of years ago. I also have other issues with my right foot that compound the issue like having accessory navicular bones and having to have that removed which eventually resulted in a pretty flat foot on one side. Then dislocating the big toe in an auto accident aggravated the issue and years later resulted in the hip replacement.

Being more proactive I would have done more to strengthen my shin muscles (not the calves) and worn better shoes and/or orthodics through the years. There is PT also to strengthen and stretch the quads that would have helped. In the UK the use of FES (foot electrical stimulators) is also more common than in the US where I was prescribed an AFO (ankle foot orthodic) that ended up weakening my shin muscles further but if it got me out walking enough to offset it – well then it would have been worth it.

So- check out those options and I urge you to stay on top of it as the gait imbalance could cause bigger issues down the road as it did for me- Good luck!


crockett32
1 month ago

Can anyone tell me, as precisely as possible, the Spanish translation for “neuro-physio assessment”?”Evaluación neurofisica”? I want to tell my neurologist. Whatever it is, there has to be a way, as stumbler said, to identify the muscle groups not working right and exercise them to have the best life I can have with MS, instead of just waiting for it to eat away at my mielyne without being able to do anything.


crockett32
1 month ago

@accesscrimea can you help?


accesscrimea
1 month ago

Sorry, not sure to be honest. That doesn’t seem the correct term though, based on a search, although I am sure it would be understood.


crockett32
1 month ago

Ok,thanks.

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