Hi just want to ask a few questions. My symptoms started 3 months ago with spasms, electric shock feelings and creepy crawlies, it then went on to burning in both hands and pins and needles in my feet that are worse when I lie down. Both my hands get pins and needles as well now. Everything is worse when I lie down though. My left arm had the most problems, had some pain in it and slight weakness that doesn’t stop me doing anything and some days aren’t as bad depending on how I have lay I think. I’m on gabapentin and not feeling electric shock sensations etc as much as before but I get random burning in my feet, legs etc that lasts literally a few seconds. I did have a bladder infection a while ago but it cleared up with stuff I bought at the pharmacy. I still feel a bit of twitching in my body but not too bad, this could be the gabapentin helping though. My question is as I’ve had these symptoms so long and I’m nowhere near being diagnosed with anything but I am very worried this is ppms as these symptoms aren’t going. Also is it normal in ms to have most problems depending how I lay at night? Thanks
Hi anon.
I have some of the same symptoms as you, left arm and hand very weak and occasional paralysis, electric shock and burning, stabbing/shooting pains everywhere, muscle twitching. I’m on amitriptyline and it’s dulled the pain down abit, and calmed the electric shock feelings.
How long have you had these symptoms? Have you seen a neuro? Are you being refered for an MRI? Had all the blood tests?
Try not to jump to conclusions about ppms as rrms relapses can last months, even years, I think. And there many other things it could be. An MRI is the only way to find out for sure about the ms though…
I have pain regardless of whether it’s day or night, whether I’m laying or standing, but it does seem abit worse at night, not sure how ‘normal’ that is…
I hope you get answers soon,
xxx
Hi, the pins and needles in my feet are worse when I am lying on my back.
Have you seen a neurologist yet? If your GP thinks your problems are neurological (and they do sound like they are), he/she should refer you to a neuro.
You`ll need tests like an MRI or Lumber puncture, or EMG, to determine the type of problem you have.
But it can take a long time, with repeat tests before a diagnosis can be given.
Sometimes tests are not conclusive enough for a diagnosis.
pollxx
Hi I have had an MRI of my brain which came back clear I’m awaiting an appointment for a spinal MRI so hopefully soon. Had my blood tests at the doctors before seeding a neuro and they all put my problems down to anxiety which I don’t feel is the case as it’s been going on a while now. Am due to see the neuro again at the end of January x
I don’t get as much pain when I’m walking about etc which focuses me. It just all seems to set off when I lie down, especially if I have my neck upright too much x
Hi Is that electric shock thing like a quick electric shock in your neck? I get this feeling, in my neck really hurts and makes me jump… Is this a ms symptom ?
Hi I got the electric shock feelings mainly in my legs, they not so bad now I’m on gabapentin but I keep getting feelings that I’m having boiling water thrown at me mainly on my feet, it only lasts a second but keeps happening. I’m not diagnosed and was initially told my symptoms were anxiety which I am suffering from but believe it is because of what is happening to my body. I’m not that much help as this is all so new to me.
Hi Having the same sort of symtoms but my GP is reluctant to send me to see a nuro, given me Gabapentin that helps a little, he does say that my problems are nuro so i cant understand why he’s not refered me, is there anyone else who can
Hi Having the same sort of symtoms but my GP is reluctant to send me to see a nuro, given me Gabapentin that helps a little, he does say that my problems are nuro so i cant understand why he’s not refered me, is there anyone else who can
Hi Anon, as others have said, getting a firm diagnosis can take a while. Currently there is no specific test for MS; loads of tests are used to try and determine what’s causing symptoms, which include bloods, MRI, LP and others (as well as taking symptoms/relapses into consideration). If the tests are inconclusive then it can become even more of a waiting game, I’m afraid.
Just to add to the confusion there are lots of other things which can mimic MS type symptoms, so it’s a case of whittling the list of possibilities down.
It’s a good idea to note down your worst and most frequent symptoms (short but concise) to take with you when you do see the neuro, that way you won’t leave anything out. Limboland is a worrying time, so try to do the things you enjoy and you know will help relax you. Also, try to keep an open mind about what could be causing your symptoms (easier said than done, I know).
With regards to your current symptoms; have you been on the meds long? Sometimes it can take a little while to get the right dosage - something perhaps to speak to your GP about until you see the neuro.
Good luck
D x
Hi,
You have every right to see a neuro. Normally they won’t refer you until you’ve had symptoms for 6 weeks. Just change gp/surgery if they’re dragging their heals. I’ve worked my way through 4 gps to get what I’ve wanted!
You need to have a MRI of the brain AND spinal cord. Normally if its ms it will show up in the brain, but I’ve been told it can also show in the spinal cord. MRI is def the most accurate way of getting a diagnosis but bare in mind that sometimes people have to wait a long time until things show up. I’ve had 7 scans after 2 1/2 yrs and am pulling my hair out with no diagnosis. I’m now at the stage where I’m being refered for a lumbar puncture to see if anything shows up. Be aware that you can also ask for nerve conduction studies tests. If I were you’d I’d get a referal to the ms diagnostic clinic in Queens Square at the National Hospital of Neurology. They are the best in the country and you shouldn’t have to wait for more than 3 weeks to get a referal. They send you for tests on the same day if they feel you need them.
It might also be worth to get your B12 levels looked at (good to have them around 350). Omega is also good to help neuro symptoms, as is meditation/making sure you’re breathing correctly. Anxiety can also cause neuro symptoms so its a good idea to get some psychological support (cbt) to keep a grip!
Another thing to consider is lymes disease which you can get from a tick bite. Ticks are found in UK parks!
Good luck! Fingers crossed its just anxiety:-)