Am not yet diagnosed with MS


I’m new to this forum and have not yet been diagnosed with MS. To date I think I have had at least four “attacks”. I have had blurred vision on and off now for 4 years. I have weak legs and often trip over or fall. I have a frequently numb face along with numbness in my arms and legs - I suffer from frequent restless leg syndrome and sometimes I get the feeling of hot water being poured down the front of them. I have had two episodes of bladder problems - once where it stopped emptying - this lasted for several weeks and I needed a catheter. Eight months later the opposite thing happened and it just emptied whilst I was out without any warning - so far the urologist has not been able to find anything wrong with my bladder. I am on amytriptiline for the nerve pain that I have in my bladder which does help me to sleep at night or else I am up all night long. Finally I think that I get the MS hug - i have this tight heavy feeling around my chest, like the muscles have gone into spasm - making it difficult to breath easily.

I am under a neurologist now and have only one lesion on my brain. I have hyperreflexia in my left leg and plantar extensor in my right foot. I have just completed some evoked potential tests but am waiting for the results. I am too waiting for an MRI of my lower spine. I have read that i should have an MRI with a 3T scanner - this is not available at my hospital. Should I pay for a private one or should I wait? Like so many people, I am very frustrated with the slowness of diagnosis and am fed up with feeling like a hypochondriac - am almost embarassed to go to the GP when something else happens - to the point I am now experiencing bowel problems and have been too embarassed to go. Any advice would be welcomed. Thank you for reading.

Hi Wilbeth and welcome to the forum…

Sorry you have been having such a hard time. Unfortunately MS can be really difficult to dx and I’m assuming the neuro will not dx at this stage because only one lesion showing. I think they will probably do another MRI of your brain in a while to see if any other lesions are showing.

Have they suggested that you have a lumbar puncture?

I don’t know much about the 3T scanner so hopefully somoene else will. Have you read the sticky at the top by Rizzo… ‘A brief beginners guide to brain and MRI’? Lots of good info there that might help you.

With your symptoms I think it highly unlikely that anyone would think you’re a hypochondriac… and you should definitely see the GP about bowel problem. Don’t be embarrassed… for a GP this is really something he/she will hear about every day.

I wouldn’t think you should go private at this stage as you obviously have a neuro who’s doing all the right tests… but they have to have all the right evidence before they can dx… and believe me I know how frustrating that can be!

You are in a good place on this forum. Everyone understands and are either going through similar or have been through it… so come on here for support and to ask quesions.

Really hope you get some answers soon,

Pat x

Hello and welcome :slight_smile: Great advice from Pat already so I’ll just say on the 3T scanner question: a 1.5T scanner used well is absolutely fine. So if I were you, I would wait and see what the results are before considering paying for a scan. If you can’t face your GP re your bowel problem, you could always self refer to a continence clinic. I’d recommend seeing your GP though - it’s usually a good idea to have at least one person other than yourself keeping an eye on everything. Karen x