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Symptoms Worsening

Hi,

I am new to this forum thing so not sure what to expect or whether I’m doing the right thing.

I was diagnosed with MS at 20 years old and was recently told by the neurologist that it has now changed to Secondary Progressive as a result of similar symptoms coming back every couple of years but no longer going away.

I am 27 now but my legs feel like they are 100 years old. Balance is horrific, strength is weak and to everybody else it probably looks like I’m always drunk with little trips or foot drags every so often. I understand that these symptoms are just part of life now but I have not been offered any treatments at all even though my neurologist is aware of all my problems. I used to play football and be able to run everywhere, but now I struggle to run up a step let alone play football or go for a jog.

In the last couple of weeks, my right leg is constantly agitated as if there is something irritating it inside so I have the constant urge to stretch it, move it and do anything that slightly eases the feeling. Its such a frustrating feeling that wont go away and it is slowly getting worse. Does anyone have any advice on what it could be or how I could stop it or if there’s anything I could take to make the feeling go away? Or do I just accept it as normal now and deal with it?

Thanks, I hope someone can help.

Hello Loxton

Oh you poor thing, MS at 20 is bloody crappy bad luck. And to now be progressive! I am sorry.

It sounds like you aren’t getting any help from anyone.

Your trips and foot drop can be helped. You should see a physiotherapist who can help out. If possible, assess your foot drop and maybe see if you can get functional electrical stimulation (FES) to help. Or an orthotic, or even just a a basic foot lifter, like a ‘Foot-up’ or a Boxia.

A good physio should also be able to help with exercises and stretches to help your symptoms from getting worse too quickly.

You could be prescribed drugs to help with the ‘agitated feeling’. Maybe Baclofen, a neuropathic pain drug like Pregabalin, or Amitriptyline?

Do you have an MS nurse who can help you to manage your symptoms and also help you to be referred to a physio and/or orthotist. And can suggest drugs that you could be prescribed by your GP? (Your MS nurse could write to your GP explaining what drugs they think might help.)

All the best.

Sue

hi loxton

i’m shocked at how poorly you have been treated by your neuro.

abandoned to get on with it!

try sue’s suggestions.

if you haven’t been allocated an ms nurse, ask your gp to write to the neuro and get things moving.

carole x

1 Like

Thanks Sue. All of that information and advice is really helpful.

I saw my GP on Friday and he has prescribed me Amitriptyline for the new feeling I’ve been getting in my legs… I’m not sure how long it will take to kick in, but I haven’t noticed any difference yet…(Probably being impatient!)

I don’t like to make a big deal of any symptoms I get and I try to just carry on doing everything as if I’m 100% fit but it is definitely getting more difficult to do that and I am noticing myself getting worse a lot quicker than I hoped would ever happen. I don’t really have a specialist I can speak to other than seeing the neurologist one time a year but even then, unless I ‘am physically unable to talk into his office’, there isn’t much he can do for me (his words, not mine)

I sometimes think I should get a second opinion from another neurologist and my family suggest to do so, but to me, surely my neurologist knows his stuff and everything he sees and would tell me is the same as what another neurologist would tell me. So in that sense, I just listen to what he says and get on with it.

The other problem I find is thinking that anything and everything that happens or I feel, is related to MS. Obviously that isn’t the case and I hate to just assume that if I feel a certain way that ‘oh its MS, so get on with it’. I am glad I registered on here as its nice to talk about stuff and see what other people can suggest… :slight_smile:

I have read a bit about Cannabis oil and am considering buying some just to see if I can fix myself without the need of being prescribed lots of different pills…

I look forward to any replies…

Regards,

Rory

Sounds like you need a re-mylination drug. I’d recommend Metformin and Clemastine - I think they’re really helping me. You might only need Clemastine because you’re so young. See this video https://stopms.mssociety.org.uk/annual-lecture.html to understand why these drugs might help.

Sounds as if you need a better neurologist as well. You can ask your GP to refer you to someone new and you can get recommendations for good neuros by asking on here and saying what part of the country you’re in.

Thanks for that. I will look into it and read more about them both. If I want to try them, would I be able to ask for it or does my neurologist need to suggest/prescribe any medications he thinks are appropriate?

I live in Somerset, and see the same Neurologist at either Yeovil District Hospital or Musgrove Park (Taunton) Hospital. If anyone knows of a good neurologist that would be worth trying, please let me know.

Thank you

You can ask your neurologist to prescribe them - I doubt your GP will give you them without your neuro’s say so (but that’s from experience with my own GP). If you want recommendations for neurologists in the West country, you might be better to start a new thread about this.

Loxton10 it sounds to me as if you have restless leg syndrome, that is how it feels, like your leg is agitated and you have to move it or stretch it. Its actually common in MS. You could try a magnesium it really does help if that is what it is. The Link Between Magnesium and RLS You could try it and it wont do you any harm anyway. As to the rest of your post words fail me. I find it hard to believe you have just been abandoned at such a young age, i would get a second opinion. x

Hi

Re the Amitriptyline, you should make sure you take it by 8pm so that you don’t get any ‘hangover’ type symptoms. If it doesn’t help, ask for something different, or something as well as Amitriptyline, perhaps that is better for the daytime. Amitriptyline works best for the evening and overnight, but you might find yourself zombified if you take it through the daytime.

Many people do find that cannabis based products help, either in the form of Sativex, which only a neurologist would (if they were minded to) prescribe. Or you could try CBD paste. If you did a search on this or the PPMS board for CBD, you might find some useful information. Obviously no one on here can advise you to try the illegal type, however much people find it helps them!! All we can do is sign petitions for it to be legalised, even if just for medical use. And advise you that if you did decide to try the illegal type, try to be aware who you’re buying from and the strength of the drug concerned. The ‘skunk’ type seems to me to do people with medicinal needs of little value.

I’m stunned that you don’t have help from any source other than your neurologist, and he seems a bit useless to you. Do you have an MS nurse? Or is there one you could see? Or general neurology nurses? How about physiotherapists? OTs? Bowel and bladder services? Or any specialist rehabilitation doctor or service? Maybe you could ask your neurologist to refer you or failing that, your GP. One option is of course to write to the neurologist and request help from whatever specialists you felt you needed. And send a copy of the letter to your GP, and maybe to the Patient Advice and Liaison Services (PALS) of the local hospital.

And obviously ask us for information and help. There are all sorts of people on this site who will do their best to help.

Sue

To be honest, I have seen a bowel and bladder expert in the last 12 months, and a Neuro-Physiotherapist on a few occasions regarding weakness and balance in my legs, but I feel that I am just a 15 minute appointment and I never really get anything out of it. I just come away with the hope that things will get better… when its quite obvious that isn’t going to be the case.

Hi Rory

It sounds like you need more physio help than just a 15 minute appointment can give you. It makes me quite appreciative for the services I have.

It’s hard when your legs are the weakest part of your system. Overdoing exercise can be counterproductive, but an exercise regime that is tailored for what you need sounds like what you need.

In many ways, I think improving your core is the key to maintaining as much mobility as possible. When you next see the physio, ask to have a program worked out for you that you can do at home. The key then is to do it regularly. I used to always exercise laid on the floor, until I became unable to get up from the bloody carpet! I also used a rowing machine at home for as long as I was able.

Unfortunately I then had a disastrous relapse that robbed me of my walking ability and getting fitter has been an uphill struggle. I’ve subsequently been relabelled as SP. I still try to exercise every morning, it’s basically not to get any fitter than I am, just to try to prevent further progression.

Hopefully you can develop a regime that helps you.

Sue