Hello my name is samantha i have joined this forum as my partner is going through tests and diagnosis of some sort of auto immune disease which is all pointing to MS, he is finding it very hard to express how he feels and try to explain to make me understand, can anyone advise any questions i could ask that may help him describe and make me understand fully? also he feels very paranoid with the symptoms he feels crazy and is justifying how he feels constantly as he feels like no one believes him, can anyone help and advice? i see the affects it has on him every day living with him and seeing how his symptoms affect him but i want to understand fully so i can help more has anyone got any ideas or advice i would love to know? Has anyone been called complex with the symptoms they have and the amount of symptoms they have?
Hello Samantha, my name is James and I have had MS for getting on for 30 years. It sounds like you are both having a tough time as you search for answers.
My first thing to say is be kind to yourselves, this is tough. Things don’t happen quickly and this can be frustrating. With luck your doctor can help get you in a process where you can speak to neurologists and you will get an answer.
For me, I knew weird things were happening but didn’t have a clue why so trying to explain to someone else is even harder / frustrating. There are loads of books and things on the web that can help. Time, patience and learning are important and there is loads of advice out there.
You sounds like you are so caring and keen to help. Sometimes just listening and giving space really helps. Sometime just doing ‘normal’ stuff really helps (if possible). There is no rule book and trust your instinct.
Be kind and patient to you both.
Hi Samantha, in my opinion and limited experience, diagnosed in January 2023 at the age of 55, all MS is extremely individualistic; none rarely identical. I found the first 3 months almost ‘in shock’ and even after 6 months and now in October, there is adjustment and hard to rationalise a ‘bad day’ as maybe just a ‘bad day’ not necessarily MS related. Really hard. With hindsight, I first experienced symptoms in 2017, so in a relative sense it has to distinguish rather that simply focussing on being positive. For me, talking the brain-fog and a healthier diet was noticed by others as well as me. It is really tricky.