hello everyone, im new to this site and was hoping for a bit of friendly advice. i was reffered to a neurologist at the beginning of the year, and had an mri almost two weeks ago. This comes after 6 years of pain that has continuously spread to the point where I struggle with day to day stuff including walking. Ive been bounced from department to department with most people fobbing me off (ive actually had doctors shrug their shoulders, then imply im making it up)! This all began with pain in the back of my neck and has spread from there, turning into most symptoms that match ms. My neuro guy said he thinks it is either ms, or fibro. he said it is completely 50/50. since then i have been looking online a lot, and found personally that my symptoms match ms far more than fibro, and i came across loads of other pleasent little side effects that i didnt even connect to my problems. I was wondering if anyone else out there who was once told fibro or ms, and also if people could give me an idea on how long they waited for results…feel like im driving myself crazy with all of this, want it to be over soon. Thought it might help to chat to people who are in my situation.
I just wanted to say I’m also waiting for MRI results but only had it done on weds. Feel like it’s unbearable having to wait knowing they could hold the answers. Don’t have much advise myself but just wanted to wish you luck and hope you get some answers xx
I got the a verbal result on my MRI the next day when the registrar said there was demyelination most likely suggesting MS. That was on a Friday. I then saw the consultant on the Tuesday and he explained it in more detail and gave me a diagnosis of CIS. You seem to have had a long journey to reach this point. I hope you get some answers soon as its easier to deal with anything when you know what it is.
Hi, I was diagnosed on the 8 April. I went to see my GP mid December last year when I started experiencing numbness and extreme muscle tightness. I had my MRI scan mid January and was called back to hear the results on the 8 April. What can I say it was like a bolt out of the blue. After my MRI scan I left several messages for the consultants PA trying to arrange an appointment. The letter arrived in February with an April appointment. I wrongly assumed that the delay meant it wasn’t anything too serious. I asked why the delay but was not given an explanation.
I have been referred on by the neurologist to a specialist, and am now waiting for my next appointment. My knowledge on MS is pretty much limited to what I have read on this site. The neurologist recommended that I stick with this site and not explore too far beyond as there’s quite a lot of overwhelming information out there.
I am also wondering whether I have been living with symptoms, or whether December was my first incident. I am very confused.
feel for you grace, ive also been thinking that because i havent heard back immediately that it probably isnt anything too serious. At least you know, and you found out quite quickly, ive come across a few on this forum who was waiting for ages for their diagnosis. x
feel for you grace, ive also been thinking that because i havent heard back immediately that it probably isnt anything too serious. At least you know, and you found out quite quickly, ive come across a few on this forum who was waiting for ages for their diagnosis. x
Hi al hope you don’t mind me coming in on your conversation. I empathise with your frustration of not knowing what’s going on and waiting for results. From my own experience it can be a long road to diagnoses in some case, but not all and I hope you do get an early diagnoses. when you do get the MRI results it should give a clearer picture. There are also a number of other test which do help towards diagnoses. I went through several MRI tests last year in August and was initially diagnosed with TM and possible PPMS but have to wait 12 months so they can observe any progression. Just had a LP last week and now have to wait for the agonising results, which may make finally diagnoses quicker. I hope!!! From my experience you need to keep pushing for results and appointment and then clarification after seeing the neurologist as it’s all a bit of a blur. Always take some one with you to take notes. I regularly sent faxes and e mails asking questions and do get responses quite quickly, so may be worth emailing them. Hope this all makes sense and wish you all the best. Jason.
thanks jason for telling me how it is on your side, its just awful waiting for results, feel like living in limbo land is driving me crazy! luckily my neuro seemed like a decent guy, hes has been the one and only doctor i have ever seen that has been honest with me, and he said if there is anything in my brain scan it will definitely be ms (perhaps with my very long history of problems it would be easier to diagnose?) Ive seen so many people on here who have had a scan showing leisons but their neuro is opting for the wait and see approach…after 6 years of peoblems and pain, i think if that gets suggested to me i might throw a diva fit! need to know what is wrong with me and i need correct medication! thanks for your advice, its much appreciated
Jo, Really hope your get your results soon and they start treating your symptoms of pain having had it for so long. There lots of different meds out there so hopefully you get some relief from the pain soon and get some questions answered. Jason.