I’m hoping to get some guidance on what I can do. For the past 16 years (symptoms started straight after my second son was born) I have had episodes of exhaustion, weakness in my spine and just a general feeling of malaise. As the exhaustion was so debilitating and stopped me functioning, I received a diagnosis of ME. I didn’t question this diagnosis as at this point it didn’t suggest MS. Fast forward 15 years later and I have started to feel a lot worse. My first symptom was optic uveitis, then I had mild tingling in my hands and feet followed by exhaustion. I recovered from this, but then experienced problems with my bowels. My GP kept giving me laxatives but it was like the urge to go wasn’t there anymore. I found this extremely debilitating as on a weekly basis I was using suppositories. In July this year the tingling came back but it felt a lot stronger. I remember swimming and losing the sensation in some of my toes. I also remember feeling that my fingers felt really hot and uncomfortable whilst holding a cup. I took my youngest son away for four days with a friend the following week, which was when walking became a struggle. I started to feel that things weren’t flat underfoot and I felt off balance. The following week I could barely walk (and now some 2 months later I haven’t managed to walk more than 10 minutes, as when I do I feel like my balance is off). I still tried to attempt work the following week, but when my speech was affected, I then realised that I needed to do something. I saw my GP accompanied by a friend (as I struggled to walk) who dismissed my symptoms as vague. She told me I should stick to the same GP (I tried to but she wasn’t in that week). In the end I bumped onto a friend who was a nurse in A&E who told me to go there straight away. My blood pressure was high when I was there and by this point I had head pain too. A CT scan was done of my brain which suggested that there was too much fluid, so they suspected benign intercranial hypertension. I saw another GP at my surgery as the hospital asked them to refer me. She suggested that I should go privately as the wait to see a neurologist was a long one. I cannot fault her treatment as she was caring, kind, and showed a genuine interest in finding out what was wrong with me. I saw a neurologist last week, who looked at the CT scan and said there was nothing wrong with my brain. He was very dismissive of my symptoms, suggested an MRI of my spine, but added that it was highly likely that nothing could be found and discharged me. I know he’s the specialist, but I can’t help thinking that why not an MRI of my brain too? I just don’t know what to think now. His argument was that the hospital that did the CT scan of my brain over report things and that my symptoms didn’t suggest this condition. This doesn’t take away the fact that I still feel really unwell. I meant to say I’m posting this here as I’m concerned that my symptoms could suggest MS. I realise my symptoms could suggest a number of conditions, but I just don’t know how to get assessed for it at least.
Hi Blake77
It sounds complicated. The private neurologist suggested an MRI of your spine - was he expecting that be done privately or through the NHS? Maybe that can get you on the slower NHS route, and actually provide a second opinion. I think probably your next move should be to discuss with the helpful GP as to how to proceed.
I really hope I find a GP who is at least sympathetic. I think I will pay for the MRI for my spine. I just want to at least be believed. Thanks for your response.
One of the most destructive things is when you have problems with your health and are not believed.
It is interesting just how many articles there have been recently in the press from doctors who have developed long covid, in particular, but also other conditions that are not easy to diagnose and find how often they are gaslit by other doctors not believing them, and just how powerless they become when it happens. Realising just how widespread it is, and even realising they have been guilty of it themselves.
Hope you make some progress.
Thank you. I have read quite a few articles referencing what you said. I really wished I’d stayed with my first GP, I changed due to not being even able to get through on their phone line but over the years I had got to know the GPs there. My second GP was amalgamation of several practices where I live, which failed miserably to provide an adequate service. After this all the doctors I saw at my new practice would comment on the fact I’d changed doctors twice this year, and this was already their starting point before considering my health. I have mentioned MS to two GPs. One laughed at me and the other dismissed my symptoms as vague. Whatever I have I do not expect to be treated like this. If I judged carers in this way I would not have a job and quite rightly so.