Sufferers of MS and their loved ones - support?

[Enchanted Wonderfull]

Sharon Osbourne's son, Jack, has just been.diagnosed with MS after investigating the cause of his vision deterioration. Once again MS is in the headlines and it smacks me in the face on a daily basis due to my OH having been diagnosed with it around 5 years ago.

We are in a better position than some due to his medication being very effective currebrly at controlling any episodes. However everytime he feels a tingle or feels unwell, I panic horribly.

I know there are ladies on here successfully living with MS, and possibly others with partners who have it. I just wonder if you have an online support system you turn to or whether yr partners do?

OH doesn't frequent the forums as he says its too depressing, to be honest that's probably why I've kept away as I'm looking for new symptoms on him because of things I've read, so winding myself up more, probably unnecessarily.

I know there have been some breakthroughs recently with gene therapy, and that helps, I just wonder how others are coping. I'm veering between the head in the sand approach and wanting to read everything I can and wanting to try and cure him in some way, though I know i can't.

It's the unknown that scares me shitless.

[Rosa]

Hi, I'll reply properly when I am on the laptop but there is a lot of support I'd agree the ms forums are depressing, I only ever go there for specific advice about drugs etc rather than the community iyswim.

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[Rosa]

Hello again

I use the Ladies With Lesions facebook page, but thats not a great deal of help to you as your OH is a man and you don't have a diagnosis, but they have another group for partners and carers http://ladieswithlesions.wordpress.c...-with-lesions/

I have found the official MS charity forums are good for nipping in to get specific information about MS related things, but not for hanging around in, as there are a lot of very depressed people there and it can be a horrible place to be.

My local MS Therapy Centre does lots of complementary therapies, and also is a great place to go for support. I go for hyperbaric oxygen therapy every couple of weeks and I have no idea if it is doing me any good but I find it really helpful to meet other people with MS and chat to them. It haas really helped my perception of my future, as I feel so lucky compared to some people I meet, but also realise that a wheelchair isn't the end of the world, most people have told me how happy they were to get their chair as it gave them back their freedom etc. The centre also has its own facebook group, and has lots of social things for people.

I attended a self management course run by the MS Society (or trust, I can't remember!) which again was good as had a chance to talk to others and discuss our feelings and how we were coping with different aspects. It was six weekly evening sessions.

I don't tend to dwell on it or talk about it very much but it is nice that there are places you can. There is another website called Jooly's Joint but I've never used it, it seems popular and busy though.

Glad to hear your OH is managing his condition well just now and fingers crossed it stays that way

[Enchanted Wonderfull]

Thanks Rosa,

I'm not sure if pregnancy hormones are at play now, but just reading yr post and seeing rhe word wheelchair has made me tear up, I feel like I have the diagnosis myself to be honest.

OH doesn't really want to talk about it much as he is pretty much symptom free at the moment, so none of the therapies are relevant bar orthodox medication as my understanding is that the therapies are for managing symptoms.

I have a tendency to over react to any health niggles he has, then when he tries to talk to me calmly I.am completely over emotional, so he then doesn't tell me stuff to protect me so I quizz him about what he us keeping from me. He can't win at all!

I think i have to realise that he has had 5 years to get his head around it, whilst I've had about 5 months. I think my worries are also really selfish as I'm worried what it might mean to us financially down the line if he can't work, and how I will be able to look after him if I have a child and am working full time. It's just such a horrible bundle of worry in my head, meanwhile he can't reassure me as he has no idea what's going to happen himself!

Sorry, I've offloaded horribly

I will check that link out

[Rosa]

Gosh I'm sorry EW I didn't mean to upset you. I guess I have immersed myself in the MS world for a while and am used to it all a bit I kind of feel there isn't much point worrying about things until they happen, your OH may never have a change in his condition, sounds like he is in a good position now being symptom free