Hi I did recently post about my diagnosis of chronic pain syndrome and yep I have been using doctor google, well really I have been looking for a forum for chronic pain syndrome and even on the internet there isn’t one!!! I am seeing forums for chronic pain but people seem to have chronic pain due to different things ie ms, arthiritis, disc problems. I however have recieved this as my diagnosis. I think I saw someone asking the same question on here a while ago but can’t find the thread, has anyone gone on to be diagnosed with ms but had completely clear scans at first? Cheers Jo xx
Hi Jo.
Sorry your having such a bad time.
I think there has been someone on here before who got a probable MS dx with no lesions.
From what I can tell most neuros wont dx MS unless they are 100% sure, i.e MRI, LP etc has to show this but I think there are some who will give a probable scenario of MS but they watch and wait and get further tests done later down the line.
Its interesting that like me you have chronic pain and are now experiencing these neurological type symptoms. I now have a likely dx of FND which can be triggered by chronic pain which I have been suffering from for over 3 years.
Also the pain could be down to Fibromyalgia, have you looked into this? The symptoms of both FNd and FM are very similar to MS symptoms.
Do they know why you are having chronic pain, i.e. previous surgery, injury or another illness.
I have learnt a lot from the site neurosymptoms.org.uk It explains really well how the brain can react to pain, illness etc and produce these neuro type symptoms. Mt neuro directed me to the site to explain FND. Its worth a look.
Take care, hope you find more answers soon.
xxxx
Thanks bunny, no injury or anything occurred befor all this started. That’s what’s so frustrating. This is my second neuro and they both seem pretty sure it’s not ms, although my first neuro has not discharged me for some reason??? Even though he seems totally convinced it’s not me or neurological at all, he has even put it in writing but still sees me. My second neuro says it is just my nervous system plating up and there’s no explanation. I suggested a rheumy to him and he said I can go from specialist to specialist and never get a diagnosis. I have heard of fimoglobia ( sorry about spelling) and when I put in chronic pain syndrome it always seems to come up with this. Maybe I should go gp and ask for a referral but I’m worried they will refuse to give me one xxx
it may help if you are referred to a pain clinic, they can do things ranging from reviewing your pain medication to testing for diseases potentially causing the issue to therapeutic activity that helps you develop coping skills.
Fibromyalgia is the most common diagnosis for all over chronic pain, so it may be helpful to chat to people with this diagnosis to see what they did next. I have been diagnosed with it however I actually dont fit the profile at all and didnt have any pain response to the test they do for it, and the pain I have are in joints that do actually have arthritis in them caused by joint hypermobility syndrome. I have been given no treatment for either diagnosis though.
Thanks deadchick. I have been referred to the pain clinic. I probably did a stupid thing by speaking to others at work yesterday who have been there and told me they are useless. My hopes were on the pain clinic after hearing my symptoms thinking that it may be caused by something and making a suggestion but the people I spoke to say they don’t do that, they just treat you for the pain. I am starting to wonder about fimoglobia or similar but would a rheumy have to diagnose something like this? I’m going to get to my doctor as strong as I can this week and try for a referral. Doesn’t help that I’m a single parent , as I think if I had another adult to back me up and be firm they may be more cooperative xx
I have a close friend who was referred to a pain clinic and they discovered serious back problems that needed urgent operations, so for some people they can be brilliant at finding an underlying cause. They have several different specialists as part of the clinic so hopefully you will be directed to the right one. At the end of the day, if your pain is treated, then surely thats a good thing? It can take many years to track down the underlying cause, it would be good if the pain could be managed during the search.
what’s fimoglobia I can’t find it on the internet?
Hiya,
Fibro is often diagnosed before MS as it is yet another chronic Neurological complaint that does mimic symptoms of other complaints. It must be very frustrating for these Neurologists (good ones with empathy and bedside manner) to have another patient with no cause or cure; which is not commenting on the patients dread on what could be wrong.
If it is MS there must be a lesion/s on your Central Nervous System (brain and spinal cord). The spine is just a bony; bendy tube that carries millions of nerves; not much space in there so sometimes it does not image on an MRI. The brain however is a wide open space in comparison and lesion/s usually shows.
Then we come to the machine itself and the resolution the Neurologist asks for. To explain both CT and MRI scans take images in slices; a CT uses X-Rays; an MRI uses magnets. If a Neuro asks for 10 images that is a slice every 5cm and when the 10 images are put together they create a 3d picture.
A large lesion is about 3cm so it is theoretically possible; but very unlikely; for a lesion to be in-between slices so no be imaged.
Most NHS MRI machines have a resolution of 3.5 Tesla; to get a good image you need at least 7 T.
These are reasons why images of a CNS do not sometimes show a lesion/s but it could be Fibro.
G
Pain clinics are not useless Jojow, so take no notice of people who say this. When I worked at the hospice, we had a lovely doctor who came fron the pain clinic. They do a lot with ms and other neuro type conditions to help relax muscles that are locked in spasm. Give them a chance.
After you have had the appointment, then you will be in better position to go to your gp and discuss what you would like to happen next. Don’t let him/or her fob you off because unless you have a good gp, they will.
Good luck x
Cheers guys for the replie. I am Hoping the pain clinic does help me and points me in the right direction. Ggood what I mean is is it possible for no lesions at all to show on an MRI if it were to be ms or would it be more than likely that even just one would show up at a first scan? X
I think I read somewhere that a small % of people have no lesions show on their first MRI. But think it depends on how long you have had symptoms? I’ve been reading your threads and I think if i’d had a clear MRI and 2 neuros didn’t think I had MS i would follow their advice and see if the pain clinic etc helps…and if not maybe come back to the neuro. Was your neuro exam abnormal? I know it’s hard when you need answers and to try and get better xx
Hi superbecks I think my neuro exams were all normal. Kind of didn’t have chance to ask at my second one as he made me feel so rushed. Something that gets me is that although my fist neuro is so certain it is nothing he never discharges me. I am also thinking to try and forget about neurological things at the moment and concentrate on the pain clinic. I’m also going to ask for a referral to a rheumy even if it’s just to rule this out. I think I would have much more faith in neuros if they took a bit more time to explain things and didn’t just rush you through appointments This neuro is sending me a written report so I hope I will find out if my neuro exam was all normal once it is sent to me x
How long have you been having symptoms? I’ve not been right for over 3 years now. My neuro exam is abnormal though. I have reduced sensation down the whole right side of my body and no reflexes on that side either in my leg or foot. My toe shoots upwards but not sure what that means. I wondered if it could be a trapped nerve but not down the whole body i’ve been told. I get symptoms of ants crawling, tingling etc on the left side of my face too. I have no idea what it could be along with all my other symptoms. The neuro said MS is a real possibility. But it’s complicated as have had some seizures also. Lets hope we both get answers soon xx
How long have you been having symptoms? I’ve not been right for over 3 years now. My neuro exam is abnormal though. I have reduced sensation down the whole right side of my body and no reflexes on that side either in my leg or foot. My toe shoots upwards but not sure what that means. I wondered if it could be a trapped nerve but not down the whole body i’ve been told. I get symptoms of ants crawling, tingling etc on the left side of my face too. I have no idea what it could be along with all my other symptoms. The neuro said MS is a real possibility. But it’s complicated as have had some seizures also. Lets hope we both get answers soon xx
apart from pain, what are your symptoms?
Started out with a problem of feeling movement in ribs last august then went straight onto a neck problem, this followed five weeks of vertigo, went to accapuncture then 2 nights later woke tingling all over, next day had leg spasms then got loads of sensory symptoms ie burning hands, got numb patch in left arm ( not sure if that happened as lyrica didn’t agree with me) Also got bladder probs for a few days. Had a bit of a brak from end of jan up until 5 weeks ago when my neck pain returned ( only lasted a few days and feel exercising it relieves the pain). This then followed with severe pain in my lower back, pelvic area, hips and legs, accompanied by leg spasms. Bladder was in comfy for a short time, no urine infection present. If I don’t take my meds now in particular my muscle relaxant I get bad back pain, pelvic pain and nerve pain in my legs. Had an on going problem several years ago with a fracture in pelvic area and always had hip pain in that area on/off. Unsure if that’s my hip now though or referred pain from my back. Guessing my list of symptoms is too much in one go to be ms related? This is what I gather from neuros anyway x