Hello everybody I’m new on here and not really sure if I have ms. I have had symptoms for years but I could never put my finger on what it was so every time I go to the docs I could never describe what was wrong with me and always leave very frustrated. In the beginning the symptoms would only last a few days then disspapear and come back every couple of months. But now it seems to have reversed I get the symptoms for a couple of monthes with only a few days where I feel well. I’ve not been sure what it is until I came across a article about ms and the symptoms rang very true in my head. I havnt seen a doctor yet and spoke to him about the possibility of having ms as every time I go to the docs I find it very hard to get the right words out to say to them. I have recently been told I have a ereguler heart beat something to do with wiring problem between my lung and heart. Also had a scan on my lungs and they found 16 10mm nodules on my left lung but not sure how they got there I feel like my body is getting worse. I was walking to the shop the other day and my left leg just gave way and I couldn’t walk for about half a hour. Everything seems to be happening on my left side of my body. I have strange burning sensations all over the left side of my body which starts In my face with numbness when this happens I get a little slurred speech. Then over a few day it moves all over the left side of my body and it hurts and stings at the same time it’s hard to describe. In the evening I feel like someone is squeezing my chest and ribs and it’s really sore and I have to take deep breaths as though I’m trying to catch my breath I get stabbing pains all over my body from the bottom of my feet right to the top of my head. I get blurred vision more in the evening but it comes and goes within seconds I also get white flashes in my vision. I have balance problems and when I walk I feel like I’m walking all over the place. I have this pain deep in my left calf muscle which comes and goes daily. At the moment I have thus pain down the left side of my neck which is new. I just started with another cycle a few days with only a few days of feeling normal in between so I feel like it’s getting worse and I’ve never had my leg gave way before. Sorry if this seems all jumbled up. But I know when I go the the docs I won’t be able to explain it as I know what I need to say but it won’t come out. Can any of you relate to this?. Sorry don’t want to waste anyone’s time as I havnt even been seen by a doc yet but I’m going next week and I want to be able to explain my self properly to him any tips? Thank you
write down what you have told us here.
read it to your gp, pausing for him to acknowledge it.
tell him how long it’s been going on.
don’t say that you suspect ms until he says what he thinks.
at that point you could say that it may be neurological.
Thanks Carole that’s a great idea I will do that Marcus x
As Carole said, write down your symptoms and tell the doctor, what I’d suggest is brief bullet points rather than a long detailed list like you’ve given us.
So, go through your post, write down the symptoms together with timescales, ie how long things have lasted, whether a symptom has stayed with you or gone away gradually, or quickly.
That way, you can give the highlights (or lowlights!) to your doctor and see what they make of them.
I agree with Carole, doctors like to hear symptoms and make their own mind up about diagnoses. So you could suggest that it seems to be related to your nerves, or neurological, but don’t suggest MS as a potential diagnosis. Apart from anything, it might not be anything like that. There are lots of diagnoses that share symptoms with MS. Including some vitamin deficiencies (B12 and D for example). So chances are your GP will want to rule out vitamin deficiencies first.
Best of luck.
I have a appointment with a neurologist next month. What should I expect?
Generally a neurologist will want to hear the history of what has happened to you and when. So the list I suggested for your GP would be what the neuro wants to hear too.
Then the neurologist would usually do a physical examination, this would include looking at your reflexes. They’ll do things like ask you to shut your eyes and tell them if they are bending your big toe up or down. A pinprick test up your legs on both sides. Strength tests on feet and arms (push away, pull against my hand). They scratch the sole of your feet to see what happens to your toes, whether they go up or down. Then they’ll look at what your eyes do, ‘look straight ahead but follow my finger with your eyes’. They might ask you to walk, or squat then stand, or stand on one leg (maybe with your eyes shut). Touch your nose with your finger. A whole load of things, some of which make sense, and some seem bizarre. And some of them quite quickly one after another. You get used to them after the first few times a neuro exam is done.
Following this, they’ll perhaps say, ‘well everything appears normal’ or ‘hmmm’, or that seems a bit slow or weaker on X side. They could refer you for an MRI, lumbar puncture, evoked potentials and / or blood tests. And they might do this even if they say ‘it all looks normal’.
They might give you some idea of what they think, or act a bit cautiously in what they say.
Ask whatever questions you have. (Write them down and don’t be shy about getting your notes out.)
If possible, take someone reliable with you. Their job is mainly to remember what is said. The trouble with these appointments is what I call ‘neurologitis’. It’s where you ask reasonable questions, appear, even to yourself to be taking it all in; then walk out of the room and ask ‘what did s/he say happens next?’ Or ‘what just happened?’
Remember to ask what does happen next, if you are referred for tests, you’ll need some feedback. So an appointment in 6 months time isn’t really much help.
Good luck with it. Let us know what happens.
Thank you sue for your feedback I will write every thing down. Thanks again x
Started having another episode again went to see g.p gave me amaltriptame but don’t seem to be working… any suggestions to ease the pain?
Amitriptyline (I assume) is generally used in the evening (by 8ish) so you don’t feel crappy the next day. I might try taking one in the afternoon, so long as I know it’s not going to make me dopey (so not before driving). Amitriptyline is usually a good drug for your type of burning, pin and needles type pain.
Otherwise, for neurological pain, you’re better off asking the neurologist what s/he would recommend.
You could of course try over the counter analgesics, maybe co-codamol? That might help with head/neck pain if that’s what’s happening right now. Otherwise, try heat packs or cool packs, depending on what helps. Some people alternate heat and cold packs for neurological pain. You can buy hot/cold packs from the chemist. I’d look for the type of heat pack that you heat in the microwave.
Ok had my mri head and spine havnt had the results yet but I’ve been asked to go for a pituitary mri has anyone else had this request?. My g.p has had some letter from my Neuro as I spoke to the receptionist but nobody is telling me what’s going. Feel like I’m been left in the dark. Has anyone had this request? Thanks
Yeah I’ve had this last time. They want to check for lesions or tumours which ‘could’ be there. I have a pituitary tumour and lesions…and I still don’t know what’s going on! Keep me posted, I’d be interested to see how you get on.
Hi Beverly yes I will let you know for sure. I had a letter from my Neuro yesterday saying the radiologist had put some comment on my scan about the soft tissue area near the pituitary what ever that means.