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Husband just diagnosed with Remitting Relapsing MS - appreciate any support /advice - Carers UK Forum

Husband just diagnosed with Remitting Relapsing MS - appreciate any support /advice

For issues related to specific conditions and disabilities.
My husband has already got Schizophrenia, now he's at the age of 45 also been diagnosed with Remitting Relapsing MS.
I'm terrified what our future holds. So far he's had one major attack 6years ago, one minor attack of numbness in foot, which last about 6 weeks. Both cleared up completely.
This week following diagnosis about a month ago following stress he's had pins and needles in both feet and hands, lasting hours, then going?
Sometimes life is Just Not Fair (with capitals!)

I'm afraid I've no suggestions at all, only deep sympathy. I wonder if joining an MS forum would give you more practical help in terms of his care needs now and what may become in the future.

Do any of the meds for his MH 'disagree' with anything he might be taking for MS?

It's always difficult, alas, when someone has TWO major health conditions, as it's usually the case that the consultant for one of them doesn't really understand the impact of the other, and vice versa. I would most definitely 'copy across' anything you get from one consultant, to the other one, don't rely on them communicating between themselves 'automaticaly'. Are both his consutlants at the same hospital? I hope so, otherwise you have another layer of 'mis-communication'.

I don't know whetehr this is any 'future comfort' at all, and sorry if it just sounds like anodyne pap (!), but it does seem that MS MAY be about to undergo a real revolution in treatment, with some promising trials involving stem cell regeneration. When my husband was diagnosed with cancer some years ago I found it heartening to read up on all the research and trials - it gave hope.

Also, again, no idea if this 'helps' or not (and you may well know it already, or it may not apply to your husband for other reasons) but there seems to be a tendency for schizophrenia to 'ease off' almost of its own accord, with old age.

So, MAYBE there is cause for future hope on both fronts??? I do hope so. Living without hope is the worst, I find.

Kindest wishes to you at a frightening time, Jenny
Hi Trigpoint and welcome
A family member, just a couple of years younger, has MS and sounds like the same sort of thing, painful pins and needle, migranes etc. The diagnosis was about 20 years ago and they still hold down a full time job and enjoy a pretty normal life with some limitations.
One thing they have done which they are convinced helps no end is to go 'gluten free' and eat a very 'healthy' fresh food diet. They also completely avoid certain foods like chocolate and cheese which seem to trigger a migrane. They have been on a regime of daily injections which has now come to an end and are on oral medication. They have learnt to listen to their body, take regular rest and avoid over stretching themselves so, for example, if they have been out and about one day, they will have a very quiet couple of days and not try to 'push' themselves. If you met this person you would have no idea that they had MS, (until they left early because they were getting tired).
They also are very strict about attending regular check ups and following advice.
So my relative and partner 'manage' the MS together, finding out what helps and what triggers there are by trial and error, adjusting their lifestyle accordingly.
However they don't have the complication of MH problems and I'm sorry but I have no suggestions about that but I hope what I have mentioned helps a little bit.

My husband was diagnosed with RRMS in 2012 aged 33. Stress will incur in flare up of symptoms for your husband, it is such a very confusing disease. We are 5 years in and still need a million questions answering, my hubby ha just advanced to Secondery Progressive. Take one day at a time and make a note of any NEW symptoms he has. When he is having a relapse he will always have a new symptom with a flare up of the symptom from the previous relapse.

Feel free to contact me if I can be of any help.xxx
My husband has progressive MS, he has had this for about 3 years.
I would highly recommend speaking to the MS society as they were really helpful and will post out information too x
I would second what Julie said, take one day at a time xx
If I can help, please message me x
Your not alone I hope you can take a little bit of comfort from that.

My Mum has Multiple sclerosis also.

Mum was diagnosed at 54 although we are now sure that the beginings of her Ms came many years previously.

Its been very tough to see Mum nose dive like she has in the last 3 years and I think my Dad, my younger Sister and myself have begun to realise the extent of what care Mum is going to need in the future so we are trying to get to grips with things and make some changes but its not easy thats for sure.

Mum has had a a handful of pretty bad relapses that have ended with her being in hospital each time and having to stay in for a period of time. More often than not when she relapses there is an infection present in her body so the Docs treat her infection and overtime she gets a little better and then gets sent home from hospital.
Mums MS has progressed to her being unable to move her legs very much at all. so we are looking at my parents having to move from the family home which is easier said than done and obviously were looking into things to make Mums quality of life better.

So Im currently when I can researching as much as I can as quickly as I can in relation to MS and things we can try to ease things for everyone and Im also like yourself by signing up to this forum trying to find out where we all stand with caring for Mum.

I will post anything I find out when I have time and hope this can help Yourself and others in similar situations

And obviously if you get some advice or someone posts here then that will be great for us as well.

Kind Regards,
Hi Edward, I've just written to you in the New Members section. If you feel that the home is no longer suitable, it may be possible for them to have a "Disabled Facilities Grant" from the council to either adapt or extend their existing home. To start this process, ask Social Services or the GP (it seems to vary depending on where you live") to arrange for an Occupational Therapist to visit.
When I was converting my garage into a downstairs bedroom for me, when I was disabled after a car accident, I found lots of useful information on the Disability Living Foundation website. Especially useful for me was the section about accessible bathrooms, grab rails etc. Happily, after two knee replacements, I can now walk well, but I know that my garage bedroom should suit me for the rest of my life. My top tip would be to fit a washer/dryer in the bathroom to deal with any laundry. Whilst lots of people think this cannot be done because of the regulations, that's simply not true. It's no different from a dishwasher under the kitchen sink. You just need to have a fused socket outside the room, I also have an extra wide doorway which will easily accommodate a wheelchair should I need one, and all the switches in my room are lower than usual. This gave my grandson hours of pleasure on wet days, playing with them when he was too small to reach any other switches in the house!!