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"Busy legs"

Hi, I am 57 and not diagnosed as yet but my doctor did tell me she thought I have MS. I have seen a nurologist and now have a 6 month wait for a evoke test :(. I have a lot going on with my legs at the moment, spasms, stiffness, tingling and twitching almost non stop. I can walk well at the moment as my main issue is with my arms and mouth but wonder if these new feelings are a precursor to muscle weakness in my legs and feet?

Hi Heldo

Unfortunately with MS the symptoms are varied and often bizarre to describe. I too suffer with my legs being sore , irritable, stiff or cramping much of the time. It may be worth keeping a “symptom diary” of some description as you may find triggers that make things easier or worse and will also help when you see the Neuro again, as you never remember all the questions to ask or symptoms you have had, the duration of them etc. There is no cure as I’m sure you know, but there are sometimes ways to control symptoms or other underlying issues such as vitamin deficiencies which may treat or ease them, or drugs or devices that may make life easier.

Life can look really bleak when MS is first suggested as a potential diagnosis but some people progress slowly. Trying to stay positive and find ways of managing or coping with your limitations and finding things you can do and enjoy doing rather than focusing on the things you can’t is how I manage. Conquering a task a new way can really brighten your day, giving that problem the proverbial finger is extremely satisfying. Whether you get a diagnosis of MS or something else the way you cope with the symptoms is important.

Cath x

Hi Heldo,

Welcome to the forum, lots of lovely people here, always willing to listen and offer advice when they can.

It could be neuropathic pain that you are experiencing, maybe worth having a word with the neuro or GP to ask for medication that may help it. It’s always a difficult time waiting for a diagnosis, just take one day at a time, try not to stress as this makes symptoms worse, rest when you need to, and be kind to yourself.

Good luck with your next test, hopefully then it may help the neuro to come to a diagnosis, hang in there.

Pam x

Hi there, both of the above replies are spot on. I’d question the GPs guesswork of even mentioning MS without any medical evidence. Restless legs can be horrendous, especially during the night when you’re in bed, trying to get to sleep.

Definitely keep a diary, listing anything and everything that isn’t ‘normal to you’. It will be very useful to show it to Doctors, Neuros & MS Nurse.

I was nearly 60 when I was diagnosed, my driving licence was revoked immediately by DVLA which is rare but based on proven medical evidence, it was the right decision.

Good luck hon, welcome to the Forum & keep updating your progress.

Chrissie x

Hi Heldo

Amitriptyline can be really helpful for nerve pain, I hope it helps you. If it doesn’t though don’t feel you need to live with nerve pain, there are alternatives and combinations. That type of pain is awful, it’s relentless and impacts your quality of life in a big way. I lived with it for years before I found a combination that suits me. I can’t say I don’t still get it but it’s definitely much improved.

As for the awkward “what work do you do?” questions, I don’t think that goes away. I was forced to retire in 2010 and I still cringe when asked. I’ve always had a really strict work ethic and even tried to do voluntary work a couple of years ago knowing my nursing days were over, and got fired as I couldn’t do everything they wanted me to. Nothing says you’re useless more than that!! Now I just say that I’m retired. It’s true after all, medical retirement is as relevant as that caused by age. Don’t beat yourself up.

Cath x