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Frustrated

So frustrated! My legs and arms have been really bad for two weeks. Can’t stand for longer than 5 minutes without pain or going weak and the burning and tingling sensations have been unbearable. Been crying myself to sleep because of the pain. Waiting to hear back about my referral back to the neurologist so having to cope with no help. I’ve got an 8 week old baby and a 2.5 year old and it’s getting so hard to run around doing things at the moment. I ended up staying indoors for over a week because of my legs and then was forced to go out yesterday because I needed shopping and it was awful. I kept knocking everything over, couldn’t pack my shopping, dropped things and nearly tripped over my feet. I’ve never struggled so much in my life. I really need a diagnosis. My everyday life is affected and it’s starting to make me depressed. I’ve been like this for over two years on and off but not this bad. Usually it’s just a stiff leg, tingling and twitches and a mild burning pain but never a big enough problem that it causes difficulties. Also had a constant headache with eye pain for the past 4 days but no idea if that’s related. Can I book an appointment with my doctor to get something that will help?

It’s definitely worth seeing your GP and asking for help, perhaps a neuropathic painkiller (e.g. pregabalin, gabapentin, amitriptyline).

Is the headache a new thing? The reason I ask is that migraine can cause eye pain and neuropathic symptoms like tingling etc. so it might explain at least some of your worsened symptoms (if it is migraine of course!). If it’s not a migraine, it still needs to be explained - headaches lasting 4 days is not normal.

Some GPs are reluctant to prescribe meds without guidance from a neuro, but they can - so if your GP is looking like he/she is going to do nothing, try and make it very clear how bad this is affecting your life. At the very least they can write to the neuro to say that you need to see him/her asap.

Karen x

I had the tingling/burning and weakness in my legs and arms for the past 3 weeks on this occassion. A couple of days before that I was getting muscle twitches in various places like my hands, arms, legs, back and face. I then started getting an unusual sensation in the left side of my face where it felt partially numb. The headache and eye pain is new. I’ve never had headaches with any of my symptoms before.

Definitely off to the GP with you then - headaches need to be checked out. It might be nothing, but better safe than sorry.

Have you had all your blood tests done btw? (I can’t remember, sorry.) These kind of symptoms can be caused by vitamin deficiencies.

Kx

I had all the blood tests done when I saw a neurologist in June 2010 and it all came back normal. At that time I only had a stiff leg and tingling/electric shock sensations. I also had an mri in the August of 2010 and that came back clear for my brain and inconclusive on my spine (I started shaking during the mri which I think caused that.) When I had the neurological examination I only had the stiffness in my leg and no other problems like weakness. When I received my results I was feeling so much better although my leg still felt stiff and they wanted to perform a lumbar (I do not want this) but because nothing was picked up I thought I had probably imagined it all or it had been something really minor although I experienced it for 2 occasions both lasting a month. I was told it was probable M.S when I first saw the neurologist due to the symptoms I had and the fact my grandad also has M.S. I don’t know about the other 3/4 of my family because my mother was adopted and my father never knew his mother and left him with my grandad to bring up. I then had my daughter and my stiff leg wasn’t as bad. I felt a lot better until 3 weeks after she was born. I started getting muscle twitches in my hand first and then my face. Which a couple of days later were also affecting my back, arm and legs. The tingling started after this in my feet and hands and then the electric shocks and burning in my arms and legs. Only my left side was affected the time before but now it’s both sides. It’s lasted all day for the past 3 weeks. It’s only a mild burning sensation when I wake up but in the evening it’s awful. My left side is the worse. When I go out I find it a struggle because I cannot rest. I have a tendancy to drag my feet after a couple of minutes so I have to make a conscious effort to pick up my feet. I’ve stumbled several times but luckily I have the pushchair to hold on to (a heavy tandem) so I haven’t actually fallen. The left leg is also stiff again and I’ve started getting muscle cramps because of the twitches in my legs. My hands don’t seem as good as they use to either. I’ve been getting frustrated when I’m doing things. Using a knife and fork can be a bit of a struggle and tying laces can be difficult. I can’t seem to grip small things very well. I really enjoy crafts such as knitting and sewing but I haven’t even attempted it recently because it’s so difficult to do everything. The headache and eye pain is new though. I sometimes feel a bit sick because of it. A few times I’ve felt like everything is moving around me and I’m struggling to even read this a bit. My eyesight has always been fine beforehand. I will book an eye test to check just in case it is unrelated for before I see the neurologist. My memory isn’t that good either but it’s been pretty poor since before I had the tingling. I find having a conversation difficult because I can’t recall words easily but that started a few years back. I’m ok talking to people via the internet and in writing because I can spend time finding the word I need. Doesn’t always mean I find the word though so I end up using a different word instead. I’m struggling with not having an actual diagnosis because everyone asks whether I’m ok and I can’t explain that I’m having a bad day because I’m finding every day tasks are harder. I’m in a lot of pain which has made me quite grouchy. My mother phoned me up the other day and I ended up yelling to her to leave me alone. When the postman knocks the door I get annoyed because I’ve had to get up to answer it. When someone has kept me waiting in a que for a while I get very irrated because my legs are hurting and I need to sit down. I use to be a very happy person who was happy to wait patiently and very sociable but I rarely leave the house now and never talk to people I bump in to because I struggle to keep up with what they’re saying and can’t find the words to speak back. At least with a diagnosis I can understand why I feel the way I do.

Update -

Still waiting on my neurologist referal. Tingling and burning sensation has pretty much stopped (lasted 5 weeks) and the headaches have also gone (lasted a week.) Still getting muscle twitches and my legs are now lead like. Very achy to move and struggling with the stairs, kneeling etc. Still hurts when I’m resting but worst with activity. Been getting an awful pain in my left leg today though. It’s like a needle is in my leg and digging in to the bone. It’s not just in one area but several. Can’t get an appointment with my GP. Keep phoning and there are never any appointments. If I could book in advance it would be great. Going to persist though.