A deafie here :)
Hello,
I am new and joined this group. I have been diagnosed with RRMS September 2016, it have been hard but with time and support, things will be good. & I have decided today which treatment to go for and I have decided with Avonex (Interferon Beta 1a) as it is safe for me. I could not go for any drugs that has a large number of reduced risks due to myself having a cochlear implant from a young ages, this will required a regular MRI scans .. which is unfortunate.
As I am deaf, I have noticed there have been some delay in my words, for an example I can talk about stuffs, then I paused.. for a long time, it is kinda of embarrassing and then I continue but using wrong hands shapes. I spoken about this today during my hosp app with the MS team, they couldn't answer as it's sign language (not spoken language - but they said people with MS have had this.. I want to know your opinions.
Appreciate your comments. :)
Hi @missmoona and welcome. It can't have been easy getting a diagnosis of MS, without being able to have MRI scans. Do you know how they intend to monitor the status of your MS without this technology? MS can slow our brains down, impacting our ability to "multi-task". Too much visual stimulation, whilst mentally interpreting and constructing sentences to relay by signing, may be asking too much. MSers, without hearing difficulties, can be affected by "sensory overload", e.g. too much sound and too much light. We just have to try and reduce the stimuli to levels that we can manage. In your case, this might mean slowing down the conversation, so that you can keep up. I hope this helps.
Hi @missmoona Welcome to Shift. Not being able to have MRI's to guage how MS is progressing must be a real pain in the arse :-( Cognative problems are a frequent symptom of MS, it can make it hard to remember information, communicate that information or just to 'think joined up' One of the things I've found really helps with what we sometimes call 'brain fog' is oxygen therapy although using a decompression chamber with the implant is probably not an option for you. It's worthwhile talking to your local MS therapy centre though to ask do they have the facility to let people do oxygen outside the chamber - at my local one in Reading we have a chair outside the tank where we can have oxygen at normal atmospheric pressure which is a little less effective than inside but works well too. I've sent you a friend request and am happy to share contact details for my messenger accounts if you need someone to 'talk' to about MS or oxygen (my BSL is really terrible and pretty much only the alphabet I'm afraid) xxx