I am new to posting on here and unsure if this the correct procedure, I am with a neurologist at the moment who I have seen twice, it has really upset me this week as he has dismissed my symptoms as stress? Any advice greatly received.
I am assuming this post is now live so I would really appreciate any advice given, I had a spine op last year for spinal stenosis ( came out of the blue after weeks of supposedly trapped nerve) and the consultant was extremely worried regarding a large white spot on my MRI in my spine, 1st few weeks after disc replacement and a cage I improved, however that was short lived, I did discuss a list of symptoms I had developed with my Neuro surgeon he was not interested, it was my age? I am 44, anyway he has now discharged me stating op was a sucess, my gp referred me to a Neurologist as he stated that all my symptoms sound neurological (my past history supported this as problems a few years ago, this also went on for months) they did a Hysterectomy- enlarged uterus was only thing they found after months of tests ( But no MRI) this was the only thing that would explain erratic pain and worsening fatigue. So here I am today Neurologist ordered an MRI saying all the answers would be in the results, that came back as brain clear, I did request a copy of the disc and thought I would look at my nice new discs… Spinal column is still compressed although radiologist report states it is not? however the images were appalling, ( the scan lady also bizarrely asked if I had a previous significant head injury) no explanantion given… not at all like my 1st MRI that was extremely clear, he has put me on Lyrica to help sleep pattern but has written to GP suggesting stress? I am the least stressed I have been for years and told him that. My symptoms include balance , memory short term, slurred speech, concentration, muscle spasms in arm, permanent numbness in 2 fingers, pins and needles in one arm and now clumsy and cramping in legs???. This along with constant nerve pain is putting my life on hold, I work, have children and wnt to enjoy them growing up, I am pretty realistic and whatever outcome I will manage but almost feels like they are dismissing me already. Any advice would be gratefully received
Thank you, Thresa B for replying on last post I really thought the neurologist was looking at it seriously but after I received a copy of letter sent to GP stating stress I was really disappointed, My family, friends and colleagues have noticed a rapid decline and can tell quite clearly if I am on a good or bad day, I have spoken to GP today as I don’t see the consultant again until end of June, he is requesting someone else take at the scan but he suggests I supply a comprehensive list to Neurologist next appt (as I did to my gp today), this episode started a year ago so I’m just fed up at the moment and now feel like I am not being taken seriously, I also didn’t just happen upon possible MS as all the reading matter supplied before my op on certain websites kept pinging me to MS related websites ( with my symptoms), my neurologist even suggested remitting (he used that word) symptoms after my episode a few years ago. Now I’m being labelled with stress??? I feel quite let down so if anything causes me stress this will now.
Hello Busy Mum,
I don’t have any answers as I’m going through tests myself after an episode of numbness and weakness last year, with ongoing issues with my fatigue and my eyes. I feel for you with the uncertainty and understand what it can feel like. From what I can gather, neurologists have to be really sure to make a definite diagnosis, and symptoms that may be related to MS can also be other conditions. It also takes time for things to happen with appointments, investigations etc - and of course, at the end of it all, it well be that for many of us with symptoms it won’t be MS at all.
There is always the option of a second opinion if you’re not happy with your current neurologist - but also don’t be afraid to ask them questions. If they said there was the possibility of something previously and are saying something different now, ask if they can explain the reason for the change in their thinking. Even if there is something going on, it may not be MS - none of us can self diagnose. I find that holding on to this fact keeps my thinking more ‘rational’, although I can relate to the frustration and uncertainty of not knowing, not to mention the worry of being affected by unexplained symptoms. I think ultimately we want to understand what’s causing our symptoms, and I really hope you’re able to find out more at your next neurology appointment. It doesn’t sound as if the neurologist has dismissed you if they are seeing you again, and if you go armed wih questions it may be a more productive appointment. If you feels things are deteriorating in the mean time don’t be afraid to go back to your GP.
All the best.
Thanks Butterfly_Cake for replying,
I did trust my Neurologist as he was extremely receptive and reassuring he said the scan would reveal all, I had alot Neuro type tests by his colleague and they were both glancing at each other when my limbs reacted strange it was almost like they were communicating, my husband has been to every appointment so at least I can confidently say I haven’t imagined anything, my neurologist will not say the statement MS but with the wording etc he has used I know that’s he’s thinking however my brain scan came back clear, I do know though that is a possibility. I think what has upset me more is that he has sent a letter to my GP stating he considers it to be stress?, I really know that it isn’t, that may sound odd to some people but I know there is something else going on, I am quite a realistic person and if it MS or another condition I will have to manage it, from experiences (with others illnesses) in the last few years I feel that is the only way to deal with it, accept it and manage it, it’s just the not knowing and trying to explain to people why you are the way you are, unless they have been there they seem to view you with a different perspective. They don’t understand that the consultants don’t give alot away, I think I am just frustrated, so yes as you suggested I wrote a list of all my symptoms and effects and took it to my GP, he has asked for a 2nd opinion on my scan and said I should the Neurologist the list ( I just don’t think I articulate what I’m thinking at my appointments) I seem to hold back on alot symptoms because I learned to live with them.
I do hope you find the your answers Butterfly I think it just helps sometimes to speak to stranger who is going through the same, as much as family are supportive they really don’t understand and say completely the wrong things sometimes, that does make me laugh, annoyed at the beginning but not now. I wish you well on your journey and hope it is relatively quick one.
Hello
I don’t really have any answers for you but find your journey has been similar to mine.
I’m the same age as you, had hip replacements 9 years ago and been on Gabapentin since then.
I had spinal surgery 18 months ago and shortly afterwards was when my troubles started. Dropping things, clumsiness, speech and memory issues.
Yes I was diagnosed with MS but please understand these problems could also be caused by other things. Stress, anxiety, reactions to medication. Its not a cut and dry process.
I had many lesions in my brain, spine and my LP showed the disease too, so my diagnosis was relatively simple.
With your spinal issues I’m not surprised you have problems and I sympathise hugely but until you have a diagnosis please try to stay brave and fingers crossed it turns out to be something which can be sorted quickly for you.
I wish you all the best xx
Thanks Pops, I think it’s just because it seems like a merry go round, on and off for years, get one thing sorted and another appears ( underlining factors and symptoms each time) I think I’m over it and then bang here we go again. Sometimes I question myself but then the reality is it always leads to some sort of intervention I’m sure I will get an answer one day, I think its just thrown me with the suggestion of stress from the Neurologist, over the years every weird symptom has been put down to stress… then low and behold … they tell me it wasn’t and there is an issue that needs sorting , my neuro surgeon said that all the things I was told were stress in the past were probably the start of my spine problems and if they had been addressed at the time it wouldn’t have been so bad??? Hence my reluctance to accept stress (as I have done in the past) as a factor, maybe I’m just being pig headed but this time around my life and my children’s lives are being affected, if I had answers I could manage it, I really feel for people on here who all seem to be playing a waiting game. I know there is something not right but it’s very hard to explain this to an expert because I don’t want to seem like I’m diagnosing myself or looking for a particular diagnosis, I have now written everything down for my next appointment as I never feel like I say what I really want to say or ask the questions I should ask and they really don’t give alot away ( I know why, as it could be a multitude of things) but I think now I have to be a little more organised.
I am hoping that beneath it all it is spinal still (even though they have said it was a complete success and discharged me) as while I’m looking for answers elsewhere it could be staring me in the face.
Again Thank you for your comments I do hope your symptoms improve and your MS is manageable, I wish you well for the future
because there’s nothing more annoying that not being able to remember the word for ‘mug’ of coffee and when I do forgetting to drink it or dropping it