I have not been fully diagnosed as results of the evoked potentials are not back and nor is the radiologist report from my brain MRI but I have had a ‘working diagnosis of MS’ for a while (am loads better than I was) and still have weakness in my arms and random nerve pain, buzzing etc.
I had an appointment on Tuesday with the neuro who said that there were some white spots on my brain but he would prefer to read the radiologist report before going any further but to be aware that because of clinical presentation and what he could see, there is a high chance I have ’ mild MS’.
As I am well (ish) and am taking gabapantin and amytrytiline which do help loads, I am not unduly bothered and I saw the brain scans which aren’t horrendous and only show about 4 lesions which seem tiny, though I am no expert.
My question is more for advice on a personal level. My partners Mum has MS and has mobility problems, has had various hospital stays for chemo and is doing fantastically but needs a walker and gets very fatigued and has poor balance without someone with her. She is wonderful and copes fantastically but I feel SO sorry for my partner to have to even contemplate being landed with the possibility of me getting any worse. He is loads younger than me, we have a 3 year old together that I do virtually everything for (I also have others that I care for) and yet since my hospital appointment, neither of us have broached the subject of me having MS too. I was given loads of leaflets, an MS nurse to contact and told to look on here but yet I don’t know what to say to him and clearly he feels the same. I feel SO guilty to have added to the worry of his Mum having this by this being around at all.
I just have no idea what to say or how to deal with this, even though I am clearly not the same as his Mum and it is my arms that are affected more than my legs anyway.
Has anyone idea as to the way forward or is that too personal to give advice on?
thanks and stay well all
Jacqui
Hi Jacqui x first of all stop feeling guilty!!! This is NOT your fault at all - you did NOT ask to be in this position!!
Yes it’s very personal and everybody deals with things in their own way and in their own time. Sometimes it’s not advice we need but a bit of support for what we are already thinking as a solution!
Yes you need to talk this through with your partner - his experience of seeing his mum become so disabled through MS is bound to make him scared that this is going to happen to you too x bide your time though - it’s early days and you are all probably in a state of shock x I’m sure it’ll all come out when you are both ready and the time is right to talk x me & my hubby talk through everything but when it’s something difficult we tend dance around it for a while but it always comes out in the end - often after a glass of wine or two!!
The leaflets will help x What about booking an appointment with the MS nurse and asking him to come with you? She could ‘rubber stamp’ the fact that everyone is different and MS affects everyone differently and put both your minds at rest a bit.
Hope this helps a little xxxjenxxxx
I really cant answer this because its similar to my situation,BUT ITS NOT YOUR FAULT.
My mom ended up in a nursing home with ms after years of my dad struggling alone with her…they live a long way away from all family.
I was dx with RRMS in Feb and hubby went into meltdown and said Ive seen your mom.Since then we havent discussed it at all, and I never let on whats happening to me and force normality when people are around.They still dont know I come on here.
This is NOT a helpful way to deal with it.
What have you found to be a good way of dealing with past difficult issues? I do have to agree with Jen that a bit of dutch courage is often useful. Could you approach it by saying what worries you the most about me having MS and take it one step at a time.
You know your hubbys reaction to things better than anyone,has he read the leaflets? Does he realise that his moms ms will affect her uniquely so he can,t judge her against you. Most people who know a person with ms think everyone presents in the same way.
I wish you all the best…and hope you quickly open the lines of communication
Pip
Aww Pip x no it can’t be a helpful way to deal with it, but what can you do? Your family must be terrified and they probably think that you are thinking the same x
When MS was mentioned to me last November I told my hubby straight away - I also kept on telling him everything as I was learning myself!!
Neither of us knew much about MS so I told him every single detail that I was reading!! It was a case of 'if it is MS - this could happen or that’s a possibility" …Poor man - I’m a ‘talker’ - I’ll talk to anybody about anything - he is not - so I had no idea just how much all of this supposition was terrifying him - until he totally broke down xx
I’ve eased off a lot since but in some ways it was a good thing to do because now everything is out in the open - the worst scenario has been acknowledged x
For you Pip & Jacqui it’s just so not as simple as that - you and your families have lived with this horrible illness - for you the worst scnario is very real - it and that’s a whole different ball game xxx
It’s strange - for many years I’ve worked with all sorts of people with all sorts of different disabilities, illnesses and issues -using art as a therapeutic tool - but I have never worked or been involved with anyone with MS xxxxxjenxxxxx