New leg symptoms?

[Kacijaine]

Hi everyone,

I’ve been on here for around 3 months now but haven’t had the words to post anything, just been reading and relating to a lot.

I got “diagnosed” in June. I say it like that because my GP just threw out the words Functional Neurological Disorder, Fibromyalgia and MS as if I should’ve already known that’s what it was.

A lot of my symptoms seem to be with my legs as far as I can tell. Either they go numb or they’re just in agony.

The last few weeks I thought I was doing a lot better. I wasn’t having to rely on my rollator at all and was able to do a lot more with barely any pain, but this past week it’s like it’s all came back worse than ever.

My whole body has been in agony and my legs have started going numb again.

Anyway, I have just noticed something new happening with my legs and was wondering if it’s part of this and if it means I’m going to get worse or something?

My legs just started this really bad twitching, kind of like a seizure? Which has caused me to fall again. I have no idea what started it but I can’t seem to get it to stop.

Also, has anyone found anything that helps manage the pain/discomfort? My GP won’t give me any meds or physio.

Any help would be greatly appreciated.

-Kaci

[Junebeatle]

I have predominantly leg symptoms now that my facial spasms, tongue movements, & blepharosam (sp?) have abated in the last few months. I get like a burning neuropathy in my legs mainly at rest (especially in the evening), I also get involuntary muscular mis-firing in my leg muscles all over (some days few, other days it’s debilitating) I don’t have a solution for it, it’s something I think I have to endure. Also my toes will move themselves at random (like curl on their own, no cramping or pain, just feels weird)

I’m trying the plant-based keto diet to see if it helps any. I’ll let you know. I do take Valium nightly 7.5mg-5mg since my FND got to the point where I was shaking & having muscular contractions all night long. It helped them during sleep, I get 7 hours now.

[M3rry]

One thing I will point out is that GPs cannot diagnose MS themselves - this needs a neurologist and a brain scan. Get that checked as that one of the three has a known cause and treatment (it's very personal how well the treatment works but it exists).

FND and FMS (fibromyalgia) have no known cause or recognised treatment - it is all management and symptom control. Though the good news is that both have actual changes that can be found by researchers (ie VERY expensive tests and need the kind of expertise not found outside research) that prove that both diseases actually exist outside our minds!

Check if you are able to self-refer for physio (this is area dependent).

As someone with both FND and FMS I am really grateful not to have MS, my symptoms vary but do include numb feet, spasming muscles (bad enough that it looks like some of the tendon attachments got damaged - they are healing slowly). I have found few treatments that directly help prevent symptoms but having GPs who are willing to let me control my self management does help greatly with me being able to deal with symptoms as soon as I need to and feel in some way still in control of my life.

[AjaStar]

Get a new GP. You need someone who is more sympathetic and who will give you referrals for physical therapy and cognitive behavioral therapy to help manage your symptoms to at least improve your quality of life somewhat.

[artmom]

I agree, new doctor. An fnd dx is often very much delivered like that but not ms and not without testing. And both should come with imaging testing as if you ask me you can’t possibly say there’s no structural damage without mri. Also a gp can’t dx. You need a neuro referral.