Hello all, I really hope someone can offer me some advise? I’ve just been discharged from my neurologist for the second time, witha letter sent to my GP saying I just needed “reassurance” and basically a prescription for deep heat ( I did ask if that what it was and short of patting me on the head he said it was completely different, the pharmacist offered me deep heat as its the same but cheaper!) I have had symptoms for nearly three years, from niggling tingling in a foot or a hand to being so very tired and the most awful pain in my ribs on one side normally and the feeling of utter confusion, even disorientation. I sometimes lose sensation in my arms but usually my right leg, it feels like the path in front of me is spinning and I end up walking to the side instead of straight ahead. I’m not imagining this, however two scans that were clear say otherwise, my GP really, really patronises me and even told me to “think happy thoughts” or “eat more cereal because it contains B12”, even though my blood tests were fine. Am I wasting their time? I’m so scared to go back, I don’t want to be sick but I know something isn’t right and I feel ignored, is this normal? Starting to think it must be in my head, and feeling a bit frustrated, what do I do, how do I make them listen? Xx
Hi, im waiting diagnosis I can only suggest that if your not happy then start afresh and see a different doctor and if possible see a different Neuro at a different hospital, I had to do this when I was first diagnosed colitis and I was put on meds and was not getting any better and continued to lose weight and my joints hurt, the doctor I was under at my docs said that id only got colitis mildly and my joints shudnt of hurt through that. Anyway I was not happy so I saw a diff doc and we started from fresh and was referred to diff hospital and had all tests again and was diagnosed with crohns disease it’s similar to colitis effecting the intestines but I hadn’t got it mildly and was put straight on steriods , aldi crohns was making my joints hurt too and now on right meds and I’ve gained 4kg in 6 months. Sorry I kno this is not about MS but sometimes it’s best. If you really feel there’s something wrong and your not being taken seriously then to change docs and start from fresh. I was lucky and saw a diff doc at same practice who took my syptoms seriously and is doing so again now with my other syptoms relating to ms type syptoms, which im waiting for MRI results for. Good luck to you
Where I live I’m very limited to where I can go, we have one super hospital and not much else. My husband has looked into going private but that’s uber money. I think I will just have to suffer it, I can’t face my GP again, no matter how bad I feel. Thank you anyway x
Hi mrsstubbs I’m not diagnosed as yet and I’m going thro the process of scans etc. Just wanted to tell you when I first went to my docs over two years ago, the first doc I saw told me my arm pain was old age and I just had to live with it!! I was 43 at the time - hardly old! Since then my symptoms have developed and now it’s all down my left side. If you don’t go back and speak to them again, you are at risk of getting worse without any help. I know it’s hard speaking to someone who you feel is not Listening, this can make you really emotional but please don’t give up on yourself. You know how you feel. They don’t. Tell them you are not happy with the result and you still need help. Even if you get upset in saying this to them. It’s their job to listen and help you. If you feel you are not getting support, keep in touch on here. There are many people on here who offer great advice and can make you feel better about your symptoms Please don’t give up. Mandy x
It is terribly disheartening to feel that the medics are not really taking your problems seriously. All I can say is, please try not to take it personally - it happens. You can take comfort from the fact that they will certainly have excluded any really bad stuff. That is progress, and good news. If, beyond that, they are saying ‘case closed’ for now, they aren’t going to want to open the case again unless there’s new evidence. But that’s OK: time is a great diagnostician - if there is something serious going on (and I hope there isn’t) then it will reveal itself, that’s for sure. So if you are tired of banging your head against a brick wall (and I certainly would be, in your shoes) then the easiest thing to do is to say 'sod ‘em’ and just get on with your life. If something else crops up, then you enter the medical fray again. I know it is hard to be patient when you feel in your heart that all is not well but in your boat I think that’s what I would do.
I completely agree with Alison (as usual!). There are plenty of neurological conditions that do not show up on MRI, but most of them will have been ruled out from your clinical exam and blood tests so seeing another neuro is likely to end up in the same outcome If you haven’t had a spinal MRI or evoked potential tests (eg VEPs, SSEPs), then it might be worth considering another opinion, but they would be very expensive privately. Being patronised by your GP is hardly helpful though! I would definitely be having a firm conversation with him/her and/or finding a new one if I were you. Don’t be scared of or intimidated by medics. They are just human and they are no better or worse than anyone else. Karen x