hubbie just diagnosed with ms

rosepetal

hi all, i am a newbie here but having a tough time at the moment. my hubbie was diagnosed last week with multiple sclerosis and i am just devastated. he has always been a healthy, strong man, hardly ever sick and this is just a bolt from the blue. he says he is fine about it all but i reckon he is in denial, he is that sort of person, if he doesnt talk about it then it doesnt exist, and he is determined not to let it change his life in any way, which i admire even if i think its unrealistic. my problem is that on the one hand all the websites show a pretty gloomy outlook which is depressing whereas any one i mention it to is falling over themselves to tell me about their friend/auntie/dog who has it and is still working/climbing mount everest/saving the world whatever:rolleyes: and i dont really know where the truth lies, in between i guess. i suppose tbh i am also grieving for the life we had planned (when our kids are grown up!) and not a little frightened about what the future holds for us both now.
i am probably coming across like a bit of a moany arse but i am glad to get it off my chest!:o

curts82

My grandfather had it and my 18 year old 1st cousin was diagnosed last month with the early signs of it!! it can be pretty devasting news alright!

byhookorbycrook

pm'd you

byhookorbycrook

Moan away, it IS a greiving thing. People speak of the "relief " of being diagnosed, I bawled for 3 months.

To date people have told me that the following things cure MS
1) goat serum
2) getting stung regularly by bees
3) Lourdes
4) hyperbaric oxygen.

Be careful of looking stuff up on the net, there's all sorts of rubbish out there. Stick to trusted sites like

http://www.nationalmssociety.org/index.aspx

http://www.ms-society.ie/

nesf

rosepetal wrote: »

i am probably coming across like a bit of a moany arse but i am glad to get it off my chest!:o

Moan away, the diagnosis of any long term illness is a big shock for both the patient and those around them. Talk about it, get the worst of your fears out of your system and then start learning about the disease and how to manage it and support those with it.

springgrove

Hello,
I know how you feel, I was diagnosed with MS 15no months ago, it took me the best part of a year to accept it. It was so hard to believe at 31 I didn't know what was going to happen to my body and mind in the future, and I still can't believe it some days. My Dr told me you grieve the lost of you health as you would if someone died. It was very tough for me at the time as my mother was going through breast cancer and my father had been diagnosed with prostate cancer and to top in off the dog died! My parents are both fine now thank god but it was a tough 6no months I can tell you. I married the man of my dreams 7no months after I was diagnosed and learned to live with my illness.
The best advice I can give you and your husband is to try and stay possative and take each day as it comes, there will be good and bad days and unfortunetly there is no way of knowing how the illness will progress in the future, i just say a pray everyday and hope for the best.

nellie07

curts82 wrote: »

it can be pretty devasting news alright!

Could you not have been a bit more positive with your response, why make a statement like that.


Rosepetal, Im sorry to hear about your husbands illness, I would suggest joining MS Ireland where you will get great advice and support groups, I wish you and your husband all the best for your future together.

rosepetal

nellie07 wrote: »

Could you not have been a bit more positive with your response, why make a statement like that.


Rosepetal, Im sorry to hear about your husbands illness, I would suggest joining MS Ireland where you will get great advice and support groups, I wish you and your husband all the best for your future together.

hi nellie07, thanks and appreciate ur concern but tbh curts is right, it was devastating news, i felt like a part of our future had died that morning, when my husband rang from the hospital with the news. while of course it is best to be positive etc, we also cant deny the truth that a diagnosis like this is life changing... (and not in a good way!)

hi springgrove, god u have really been through the mill, i am so glad to hear ur parents at least are doing well. my own parents have been very supportive thank god, even though they have problems of their own, my mams health is not great (fibromyalgia, arthritis) and we are still all trying to come to terms with the death of my brother last summer ( he had cf). hubbies parents sem to be in denial a bit, his mum told him yesterday none of this wold have happened if he had lost weight ..... and to think the pharma companies are wasting millions on ms research when the answer is so simple:):).
ur doc sounds much better than hubbies doc, at least urs acknowledged it was a distressing diagnosis. we were made feel like we were over reacting when we were shocked and a bit worried!! doc told us to go home and forget hubbie had ever been in hosp til his next relapse, ffs if only it was that easy. maybe the docs give that kind of news every day and its routine to them but a little compassion and understanding wouldnt have gone astray. in fact hubbie was on his own when doc first told him, and doc just said we believe u have ms, didnt explain what that meant, and walked away. he wasnt given so much as a leaflet on it and i had to print stuff off the internet to bring in to him the next day, before he understood what he had. that made me so angry :mad:.
anyway rant over:), thanks for the replies all.

nellie07

HI Rosepetal, I wonder would it be worth your while getting a second opionion, a friend of mine was told much the same as your husband in a flippant kind of way, and when she got a second opinion it turned out it wasnt ms. might be worth a try, or do all the symptoms point in that direction?

nellie07

just realised it was M.E my friend was supposed to have.. but a second opionion might put you at ease all the same.

rosepetal

hi nellie,
doc seemed pretty sure its ms, hubbie had mri, ct scan, lumbar punctures etc and apparently the mri showed up typical lesions. also his symptoms do tally with the little we know about it. the doc he is attending is supposed to be the top neurologist in the country, and maybe thats so, but i dont think people skills is one of his strengths:)

nellie07

some of them can be so bloody insensitve, big wages and no heart. very upsetting to be treated like that

byhookorbycrook

I'm very lucky with my neurologist, she's straight, no nonsense, but understands where people are coming from too.

CathyMoran

Hi,

I just saw this link on the BBC website that may be of use: http://news.bbc.co.uk/1/hi/health/7965363.stm

Sorry that I did not reply sooner. I do not have any experience of MS but I have several illnesses, some more serious than others. When you are first diagnosed I found that there is relief at diagnosis but also a sense of denial, it gets you through the begining, then it can hit you...well, at least that was how it was for me. I still get upset the odd time but I talk it through with my husband (who is amazing). I know that you are scared - have been on your side of the fence too and it is not nice but together you can deal with this. Please feel free to use this forum to vent etc whenever you need to.

hyperone

Hi Rosepetal,

Sorry to hear your husband was diagnosed with MS recently. I know hearing the news can knock you for six. I felt I was diagnosed twice!! Had an MRI for the brain, and then 6 weeks after my first MRI had another MRI for the brain and spine. That was then, and this is now. Your husband sounds like a positive person, and this will get you both through this. It is over one year now since I was diagnosed, I am smyptom free and I am not taking any medical treatment, in fact I am healthier now than I ever was! I had to go for another MRI and last week I got the results. The great news for me is that the leisions in my spine are healed. I do have some new leisions in the brain but I am not worried about them. .It is so ironic because since I was diagnosed with MS, my life has gone in a total different direction, for the better.
Good health to you both think healthy, and be healthy

Solas8

Hi,
I met two people recently who are in total remission from MS by changing their diets. One used the macrobiotic diet, do not know about the other but it was diet and exercise related. Worth investigating.

The man who changed his diet to macrobiotic is in the Sligo MS group.
K

dory

I would just like to add to what the last two posters have said. I too have heard of people who have seen a complete turn around with their MS and they all put it down to diet.
There's a guy called Andreas Moritz who has written many books which talk about this. But of course, if you google you will find as many people who say it's bull as you will advocates. I guess you won't know until you try it out but as with any long term illness, a perfect diet can't hurt!

fend

Hi there, my father has had MS for over 15 years now and he puts his good luck with it down to a can of fanta or 7up. Just one can, at some point of the day. There was a piece written before [trying to find the link at the moment] on how the phosphorous or something in the can reacts with the cola to help reduce symptoms of MS.

Soon as I find the link ill post it, its been a while since iv seen it but ill keep looking. This information was written maybe 2/3 years after my father was diagnosed. He had dramatic symptoms before he read this piece and one day said hey whats the harm in trying it out! Here he is over 15 years later, still drinking from a can, and still standing strong!

Anythings worth a shot, no harm in not giving it a shot. This is not medical advice, its just a suggestion, could be a total myth. I'll post the link as soon as I find it. Bear with me!

bnt

I can tell you that MS is different for everyone, but it is not the end of the world. In addition to taking care of your health, there are all kinds of options available, and more coming e.g. by this time next year there may be drugs on the market that drastically reduce the frequency and/or severity of relapses. There's also ongoing research in to e.g. the role of Vitamin D, which may go back as far as your mother not getting enough sunlight before you were born. :cool:

However, I would be wary of anyone who tells you they have a cure. There are some simple things you can do e.g. get sunshine and take vitamin D - but if fixing it was that simple as "go macrobiotic", everyone would be on top of that like a shot. There are quacks out there who prey on people's fears to make a buck.

dcwheels

Hi

Hopefully I can give some personal insight. I was diagnosed with MS in 1990 at the age of 26. While it is not the most positive news it is important to remember that it could be much worse. A positive outlook goes a long way. I have a rarer primary progressive form and rather than having attacks I have a gradual worsening. I have continued to do the things I want to. I began to use a wheelchair about 8 years ago but for me this was positive, giving me more mobility and independance as my legs are the part effected. I drive, got my microlight pilots licence a few years ago (had to go to England). I work and spend 1 - 2 weeks a month in Paris. There are ways to do most things you want to do. I am not saying that there aren't challenges but for me staying positive and taking each day as it comes without looking at a possible future that might never happen has served me well.

One piece of advice I would give from my own experience is be cautious of miracle cures. It is a strange and unpredictable disease and for that reason it is not always clear whether a "cure" has worked or whether doing nothing would have had the same result.