I’m am new to the forum, although my Mum has had a diagnosis of MS for 26 years now… i feel i need to reach out as i am worried for her future.
It started out as relapse/remitting but I’m sure it is now secondary progressive (and has been for a number of years) but this is just my opinion from my research!.. The reason i sound so vague is she has avoided any sort of medical intevention since diagnosis and opted for alternative therapies such as; homeopathy, aromatheraphy and diet etc. Firstly, I am not suggesting there is anything wrong with this and am an advocate of ‘complimentory’ therapies but I am concerned that she has no actual medical care/neurologist input and hasn’t had for a long time.
I was 11 years old when she received her diagnosis (I’m now 37 and she is 57) and have watched her battle various symptoms from double vision, coordination difficulties, chronic fatigue and pain and tingling in her limbs to burning sensations on her skin etc… She has also been affected cognitively, and i feel as though her personality has dramatically changed over the last 15 years, so much so that my relationship with her has completely changed… which saddens me deeply. This is probably why i have not explored anything like posting on a forum up until now.
Her outlook and attitude to her MS has always been very positive and admirable but i believe it is now to her detriment. Her husband is effectively her carer, along with my 27 year old brother (who will not leave home because ‘I cant leave Mum’) They have no support, she has no social life and doesn’t understand why we are reluctant to go for days out. Physically she is able to walk but fatigue, balance and coordination difficulties mean after a very short walk (normally out of the carpark) she begins to tremble and fatigue sets in which she passes off as just wanting to go and sit down and grab a drink… if we don’t its only a matter of time before she’ll stumble and fall… and then blame it on her shoes (again!!!)
I don’t know what to do…my step father has asked me to talk with her as he doesn’t no what to do…and she pretends everything is fine.
I really feel like i need to take her back to her GP and get some sort of input from somewhere and just get her back in ‘the system’?? Any thoughts, advise, support… anything! would be greatly appreciated
Thanks for taking the time to read!