I care for my Wife, who has recently after years of symptoms, finally been given a confirmed diagnosis of Relapsing Remitting MS to add to her amazing cocktail of medical conditions.
For information, she was diagnosed at age 4 with Type 1 Diabetes, suffered some childhood trauma which left her with severe depression from about age 7-8, and has in the last 3 months been diagnosed with both the MS and also Lupus (still waiting to here which type of Lupus, but it appears that the SLE version is the most likely).
Having looked at the numbers, her chances of having all these conditions are around the 1 in 125million chance. We are sort of lucky in that an old friend of mine also suffers with RR MS, so I’m pretty familiar with it.
I work full time to try and pay the bills and we also have an absoltely perfect healthy 2 and a half year old little boy, who gives her some light and joy in her life.
The NHS are being horrifically slow about most aspects of her conditions and treat all the conditions seperately and consequently we end up spending half our lives at the local hospital, despite the fact that the mental health people have still not managed to get their act together and offer her any help or support
I’ve been trying to find out whether there is any research going on into people with multiple conditions, whether there are any support groups etc for people living with multiple conditions and didn;t know whether anyone has any information about these areas which might be of use.
We currently live in Surrey, so it would need to be relatively close by, but any information anyone has would be much appreciated.
Oh, just realised that i didn;t mention that currently my Wife’s symptoms for the MS are fairly mild with partial sight loss in one eye, chronic fatigue and headaches. To be honest the biggest problem we have is the depression, to already have it severely, then get told you have MS and Lupus.
I’ve tried to get my GP to get the mental health people’s butts in gear but to no avail, the only way she can get immediate help is if she tells them she wants to kill herself, that then drags in social services because Edward (our little boy is deemed at risk) and places all kinds of complications in that respect into the fray.
So if anyone knows of any way to help get the mental health people’s butts into gear (we know my wife needs psychotherapy, for the underlying cause, the trauma, coupled with help to cope with the problems she has and putting them into perspective).
So again, any help, advice, or pointers anyone can give, either for support for multiple conditions, or for ways to get her the mental health assitance she desperately needs and i cant afford to pay for would be appreciated.
MS is commonly associated with Diabetes and is also known to occur with Lupus, though it is less common to have all three together. MS is a difficult illness to diagnose and in the case of your wife that is further complicated by the other illnesses. Your frustration with the NHS is understandable, though perhaps you are being a little harsh on them.
In terms of organisations supporting multiple illnesses - well the MS Society is by definition one of those, though it does, of course, specialise in the MS part of the illness. Your time might be better spent looking at multiple organisations; one for each problem. Medical science is so advanced nowadays that specialisation is necessary - so that means that the care and support operations must also be.
Do you have an MS appointed? They are generally the best and quickest route to accessing other help when needed and would possibly be the way forewards to having any mental health issues investigated speedily.
If you have an MS nurse she could arrange an urgent referal to a neuro phsyciatrist,they will then arrange for her to have CBT which may help,as for treating her multiple conditions, i should imagine, each one will have to be treat seperately,as you will know they all need specialist treatments in their own way,if you dont have an MS nurse for your wife ask the neuro shes under if there is one,they are very good at fast tracking.
If you are on facebook, please friend me there - Kit Minden - as I administer a support group for people with MS and other chronic diseases. Some of our members are British. Quite a few of us have multiple conditions including MS, lupus and diabetes. We have over 500 members.
There are several things your wife can do to feel better. The first thing I’d consider is increasing D3 intake. Non-MSers take 1000-5000 IU a day, generally. MSers can take up to 50,000 IU a day. D3 is very rarely toxic, even at these levels, and she can have a blood test to check that her level stays safe. But D3 can enhance strength and coordination, shrink lesions, and aid in blood sugar control, too. MSers tend to feel a difference between 30,000 and 50,000 IU a day. The liquid form of D3 digest better than the powdered, so look for softgels, instead of gelcaps. Here, in the States and Canada, we can get a brand called Now for 5,000 IU, and take as many a day as desired. We can also get a prescription for 50,000 IU D3 by TEVA taken twice a week.
Hi - I do sympathise with multiple conditions with MS. My husband started with a stroke in 1973 (complete paralysis of the right hand side of his body). We had 4 children at the time, the eldest was 8 years old and the youngest 4 months old. Then MS kicked in a couple of years later (RR) - this changed to Secondary Progressive in 1990 when he became a full time wheelchair user. In 1994 he had a heart attack and in 2006 he was diagnosed with Diabetes type 2. In 2009 he had several heart attacks and was diagnosed with Angina. This year he has been diagnosed with cancer of the mouth. In all these conditions the doctor treating the current condition knows nothing about MS and what effect treating the current condition will have on his MS. He was discharged from hospital in 2009 with leaflets telling him what exercise he could do. Of course this was totally useless as he couldn’t do any of them because of his MS so we were left not knowing if just trying to pull himself around in the bed would be too much strain.
I am currently trying to get help and advice for his MS as he has had a major operation for cancer on his jaw and cheek and is about to undergo radiotherapy. I have rung the MS nurses but they were out of the office for the day that I rang but I have still heard nothing. I have found over the many years of caring for my husband that the only way you get anything done is to do it yourself! My husband worked for many years, although work was interrupted for 18 months recovering from his stroke. He returned to work for a further 10 years with his MS until his work place described him as “ineffecient” and retired him. I also worked until I was 66. The outcome of this is that we get no help from the State and have to pay for everything ourselves.
The only way to cope is to become your own expert, read and research whatever you can. Take up hobbies that keep the MS depression at bay. Get out and about in our wonderful countryside. Meet people who are not disabled so your circle of friends is broad. Do not wallow in despair - you will see a light at the end of the tunnel.
I have multiple conditions as well. I have RRMS, a spinal injury as a result of an accident, an auto-immune kidney disease, severe asthma, hemiplegic migraine (which mimics stroke) and now I have pulmonary embolisms as well and am being investigated for Antiphospholipid Syndrome.
The MS is fairly disabling and I am dependent on an electric scooter for any distance over 50 metres and crutches for less than that. I have a carer come in every day as I am a single mum and simply couldn’t manage on my own.
Being in Australia my advice won’t be much use to you but in general terms the most important thing is to be very clear on prioritising your and your wife’s needs, keeping lists and finding a Dr who is willing to work as your advocate to steer you through the maze of different consultants and allied health professionals. If you can get yourselves a physician rather than a GP they can be a fantastic resource.
Do LOTS of research and googling and clip and keep files on all your relevant search results. A useful web tool I use to keep track of everythig I find is Evernote, a free download which is a simple but brilliant filing system.
Develop a thick skin and remember, “the squeaky wjheel is the one that gets oiled” so keep making noise until you get the results you need.
Sorry I can’t help with support groups and the NHS but make Google your friend and all the best of luck. And don’t forget to look for carer’s suport for yourself too. You will only be as effective as a carer as your health and stamina allow you to be so do allow yourself time out and respite too.
I have SPMS and also chronic kidney disease stage 4 (/sometimes 5). I have only been diagnosed with ms for a year, but have probably had it for about twelve years, with all my kidney failure symptoms masking some f the ms symptoms! Kidney failure means that I cannot take any pain killing drugs for my ms symptoms, I am lucky at the moment that I don’t have too much pain, and even after a possible transplant my doctors on’t let me jeopardise the new kidney with fairly toxic drugs, so i hope the pain stays away! Sometimes life is a b@mmer!!
I’m also in Surrey in look after my wife who was diagnosed with RRMS 15 years ago.
Things to check:-
Do you have a local carers association? We have one specific to our villiage. The are a gold mine of information for support groups both for youself and you wife that are specific to your area.
Get to your GP and get assesed ASAP for the mental health issues. They’ll read questions from a prescribed sheet and assign a score to your wife - the result of this score will usually determine where a referral is made to. In all likelyhood, being in Surrey it will be to KCA New Thoughts for CBT (cognitive Behavioural Therapy).
Find out where your local mental health unit is, contact them and ask for advice, not only did we find this area specific, but also location specific - some were way more helpful than others.
Get in touch with your MS Nurse, they will again advise you what is available in your location.
I’m not sure if this of any help to you but the presribed test GP’s use for depression is the PHQ9 and they normally do the GAD7 aswell. The GAD7 is for general anxiety, both tests are downloadable from the internet and it might be useful to one be aware of these tools and secondly once you have completed them (they’re fairly short) go ram them infront of the GP’s eyes and demand they listen to you !!!
You also may want to check with the localprovider of CBT SOmebody mentioned this is an earlier post i believe, but you may be able to make a self referral .
The NHS are so slow to repsond and it makes you so angry but just hang in there