Since being diognosed in 2010 I haven’t had a single day where I’m not dizzy. Sometimes it’s to the point where if I stand up I’m spinning on a roundabout. Does anyone also experience terrible pain on the top of the head ?? I can not even brush my hair it’s that painful . When I ask my specialist about this I tend to not get a shrug and not a lot more. It’s all new to me and very confusing , being diognosed with RRMS I thought u where meant to recover fully until the next flair but all my symptoms have stayed with me
Hi Sarah I’m afraid I don’t know about your symptoms but I just wanted to say hi. It’s not nice at all when you’re feeling unwell. While your specialist may not know all the answers, a shrug isn’t very helpful is it. On your next appointment perhaps you can explain how debilitating your symptoms are and how they’re affecting your life and that you really need some help. If your specialist fully understands the severity of the situation then hopefully he/she might properly listen and even call in a second opinion to help you? Only a thought, but I’d persevere if it were I. Take care and keep in touch xx
Hi Sarah, and welcome to the site
Such a helpful man, your neuro!!
Dizziness is a common symptom of MS and there are things that can help, e.g. there are exercises called Cawthorne Cooksey that a neurophysio can show you - they can make a big difference for some people - amd there are meds like stemetil which can also help. Your GP can refer you for neurophysio and can prescribe the stemetil (or whatever).
I’ve had extreme sensitivity on my scalp before - not nice! Neuropathic painkillers such as amitriptyline, pregabalin or gabapentin can help loads. Your GP can also prescribe these, but may want the approval of your MS nurse so you should probably speak to her/him first.
Unfortunately, while some people recover fully from relapses (especially early relapses), most of us find that we have residual symptoms and that these are sometimes just as bad as during the relapse. This is why most people with RRMS find their level of disability gets worse over the years, usually changing in steps (one step for each relapse) whereas people with PPMS find their level of disability gradually increases over time. That means that avoiding relapses is pretty important for RRMSers - and why DMDs (disease modifying drugs) can be so important for some of us.
I hope your GP can help. Make sure and be assertive - those who ask, tend to get!
Hi Karen &stardust Thank you both for the advice I’m very greatful . Its really good to talk to people who understand. X