I’m sure this isn’t a new issue but I would appre ciate alittle advice or experience please. My husband has progressed a little from head in the sand denial following my recent diagnosis but now is beginning to look for miracle cures. Does anyone have experience of dealing with something similar ? How did you handle it.
Thanks chaps
Janet x
Oh, boy. I need help on this front too. I have a hubby who thinks everything can be cured by some random concoction or another. I keep telling him no, I don’t want to take it, but he insists it might help, and I should try. Latest thing is some disgusting mushroom extract, mixed with squash. It tastes so foul. I was in tears last night (not in front of him) because it tastes so awful, but I feel I have to try because he is only doing this to try and help me, so I shouldn’t be ungrateful - but I didn’t want MS! I didn’t ask for this, so it’s like yet another small and cruel ‘punishment’. As if MS wasn’t enough.
Oh dear Janet and Loretta. I feel so lucky that I don’t have the problems that you are having with your other halves.
I am sure that the geniuses that are working on treatments/cures for this terrible disease will be the first to know about it and let us all know.
I’m sorry if this offends other halves but if I were you Loretta the mushroom extract squash would go over his head.
I know he is trying to help but I think I would tell him that he is not helping.
Sending you (((hugs))).
Shazzie xx
Oh dear,
I know they are only trying to help, but Loretta, that is awful! Isn’t life with MS already miserable enough (I’m not suggesting that you are a miserable person), without forcing ourselves to take disgusting concoctions with no evidence, just to please?
There is no place for this - you have to be strong and tell him that you trust your neuro (even if you don’t…always), and that you believe he would know and share it with you IF there were any DIY remedies that really worked.
Morale is so important when you’re not well.
Tears after being “forced” to drink some disgusting crank cure are not the way forward, I’m sure you know. Your life will become a misery if you don’t speak out honestly to nip this one in the bud. Next week it will be something else horrible! Loved ones need to understand there aren’t any “miracles” out there, that the Medical Profession has mysteriously failed to find, or maybe even conspired to keep us in the dark about!
If the medics haven’t heard of something, or aren’t pushing it, it’s not ignorance, or because they’re all getting kickbacks from the drugs companies (popular conspiracy theory). It’s because there’s no evidence of it working!
Tina
x
Hi, thanks Shazzie. it is so difficult to strike the balance between taking care of my husband’s feelings and self preservation. i can’t belp but feel that if I can deal with it then why can’t he. The long and short is, he must learn that these ‘treatments’ are nonsense, it’s just how to help him to get to grips with it.
Loretta, think we might need to compare notes 
Tina, I said pretty much the same words to my hubby yesterday evening. Unfortunately it just ended in an argument because I’m not willing to give credence to these crank ideas.
Hopefully with a bit more time he will work it out.
I’m sure the cure will be found in some shed in the midlands by an off duty plumber and NOT in a state of the art facility by medical experts… I prefer the fresh blood of a virgin in a unicorns’ horn served by 200 year old pixie. Too harsh maybe ??? 
Lol, according to the neighbour of a friend of a friend she was cured in Warsaw at the Hospital Ameds Centrum and now, because that cure needs a bit a bit of help is in the Bahamas on some sort of trial.
where do I sign up
I think this is probably something that a lot of us must go through at some stage!
I told him I can’t stand it - it’s disgusting. He’s saying to just try it. It won’t hurt. Said I would do it for a week - he said no, I have to try for a year. I might just have to throw a complete strop, like I did with the last batch of ‘miracle’ tablets. Don’t have a clue what they were, but they were some plant extract or another. At least the tablets didn’t taste foul… This mushroom the extract is from is Lions Mane mushroom, or something, and he says he’s read research that suggests it aids remyelination or something.
I think the hard thing is that he is trying so hard to help me, which makes it harder to get angry with him. He wants to see me ‘well’ again. I say to him that herbal and homeopatic medicines that work are called medicine! There isn’t some magical treatment out there, but he counters that with ‘they just haven’t studied it yet. Look at Biotin - that’s only just been shown to be beneficial. Asprin was a herbal medicine which later became medicine’. It’s hard to argue against him when I know he means well.
He just doesn’t see the problem with me taking something that he doesn’t consider harmful. I just feel it won’t make any difference at all, other than making me feel sick… Perhaps I will have to turn the tables… He’s going grey - can anyone suggest any ‘miracle cures’ I can try on him? Spoonful of English mustard every night? Deep Heat sprayed on his man-bits once a week?
Some people pay good money for that deep heat thing !!! I heard nettles are cheaper. …
might mean well but in reality these “miracle cures” might end up actually hurting 
sounds ike they need to read “proper” info about things and stop listening to snake oil salesman that are just out to make money from people. I have never had to deal with hubby trying to make me take anything, married or not. its my decision what I put in to my body
I personally wouldn’t give any credence to a ‘miracle cure’ that just hasn’t been tested yet. Some of these so called miracles could actually be harmful in themselves; and the worry and upset caused by you having to try tactfully to refuse them (not to mention arguments!), could actually be detrimental to health (stress anyone?). Maybe I’m fortunate in that my OH doesn’t believe in miracle cures, he does read things on the Internet and ask me about them, but it’s usually established drugs that he reads about on Dr Giovanonnis’ blog (which are tried and tested). Could you point your husbands in the direction of the MS Society, MS Trust, MSRC, Dr Gs’ blog, other research sites and well, basically refuse to take any witches potion or try out any new age garbage unless you are certain it cannot harm you and doesn’t taste like regurgitated cak!!
Yours with sympathy (at least they care!)
Sue
unless it is a risk to health or exorbitantly expensive, i would suggest to give it a go. don’t knock it until you’ve tried it. with so much unknown about MS, unless there are significant negative implications involved, why the hell not?
but if there are hazards and expenses that are best avoided, you could either fob them off with “yeah i tried it for four months and it did nothing for me” (aka lie) or… and here it gets a little bit freaky but… say “thanks for the suggestion, but no” (aka be honest).
life is as tough as you want to make it people!
I often have ‘helpful’ people ringing me with the latest wacky cure! If only it was that easy. I try to remember that people are doing such because they love me or out of concern and often may not accepting of my diagnosis.
If my husband tried to suggest me drinking a mushroom cordial I would try it, as long as he drunk it first! I can remember helpful hubby bringing home some awful tincture from the health food store once, tried it then binned it!
I have looked into various alternatives, ie diet, blood flow into brain, jaw alignment, oxygen treatment, purified air all sorts but at the moment the best thing I can do for me is take a DMD, in my case Tecfidera. I am convinced that a cure will be available one day, but until then I think I will carry on with a scientifically proven DMD. Wishing you all the best, do what’s best for you.
People can suggest what they like, but you are the one in control, your MS your call.
Sarah x
Well, tackled the subject tonight. Was gnawing away at me all day. Told him that I didn’t want to take the stuff. I don’t think it’d make any difference, and I can’t stand the taste.
I got told how I need to give it time – it could take a year for there to be any effects! These things aren’t overnight cures! Got a lecture about how these things could really help. How doctors don’t recommend things that don’t have ‘instant’ results (?!?) He went off upstairs, and I sat here and stewed a bit more.
He came down and asked why I was in a mood. I said I don’t want to take that disgusting stuff anymore. He went over the ‘but it might do you good – I’ve been taking it for years, and I feel better than ever’ (yes, he does, so I can’t even use the ‘you drink it first’ suggestion! Also, I can’t ‘dispose’ of it when his back is turned as he literally stands over me while I drink it). He claims this has been used for centuries! It’s not harmful! There’s even been a study on it which confirms the beneficial effects! I pointed out how so many things have had single studies done that prove one thing, only to be completely overturned by the next 5 or 6 studies. I’m being pathetic, apparently. His words, not mine. And why am I in a strop. Why does he think?! Jeez. I take enough prescription medication every day without having to take more on the off-chance it could possibly have a small benefit in a year or two. Then he went on saying that I take extra B-vitamins, so I said – to help fatigue. Also pointed out that B-vits are water soluble, so excess is excreted very quickly, whereas I had no idea what the mushroom stuff does. I also pointed out that a couple of extra capsules with no flavour was fine, but that stuff he gives me makes me feel sick (I have another non-MS related issue which cause me to be sick very easily, so it’s something I live in constant fear of doing). Well, I’m stupid for not persisting with it. He asked me, if a treatment came out that cured MS, and tasted awful, does that mean I wouldn’t take it?..
I. Give. Up. It just makes me want to break down into tears at the moment, and usually NOTHING gets me down. I am the one who always looks on the bright side. He says I am ungrateful. He is only trying to help. I said I knew he was, which made it harder for me to tell him how I really felt.
Fingers crossed your OH isn’t so pig-headed as mine, JanetV!
madam. the solution for which you seek begins and ends with this:
“thanks for the suggestion, but no”
all the best.
incidentally, what is this miracle cure; i might give it a go…
Every now and then , my elderly aunt and uncle from Scotland sent me a clip from the Daily Mail with the latest “cure” for MS. I’m obviously doing something wrong because I must have been “cured” about a dozen times now, but I still have this bloody MS!
they’ve both got hearts of gold and no matter how many time I tell them not to, they still send clips. Aaargh!
Derek
It’s his choice to take it (but he doesn’t have MS, so he’s hardly proof of a “cure”). Equally, it’s your choice not to.
“Might do you good (if you persevere for a year or two)” is simply not good enough. Life with MS is hard enough, without adopting foul regimes with no proven efficacy.
If you want to engage in “tough medicine”, force yourself out for a walk every day, or some other kind of exercise. It costs nothing, won’t harm you, and my neuro reckons it’s better than anything he can prescribe. I’m not necessarily including DMDs in that, as I’m not sure exercise actually changes the disease course, but it certainly helps strengthen and maintain whatever physical capabilities you still have. Which drinking some faddy mushroom concoction won’t.
The argument about not taking a cure if it tasted awful is completely unfair, because what’s he’s offering isn’t a cure, or even an exciting candidate. Of course you’d put up with a little unpleasantness (or even a lot!) if there was good, strong scientific evidence it was going to work. But on some very slim and unsubstantiated chance it might make you feel a tiny bit better if you persevere for a year? No!
You’re not “old school”, who still promised to obey, are you? Even if you are, I think the time has come to decide what goes into your own body, and whether YOU have faith in it - not whether he does. It’s not his illness, and not his choice what you do about it.
I don’t want to stir up further trouble between you, but what he’s doing is bullying. Rejecting quack medicine doesn’t make you pathetic or ungrateful. It all seems to boil down to him not accepting your diagnosis, and convincing himself that if you don’t get better, it’s because you’re too pigheaded to try. This is delusional thinking. I understand why the delusion is attractive to him, but it’s no help with your real situation. You’re basically being told it will be your own fault if you don’t get better - essentially that having MS is a choice you can avoid if you try hard enough. Yes, that would be very nice in his rose-tinted world, but nobody ever fixed MS by trying hard. What he’s refusing to accept is that nobody ever fixed MS at all.
Tina
x
exactly! was thinking the same thing
I’ll be honest - I think you two are right. He is bullying me into taking it. He isn’t intending to, and his intentions are good, but that doesn’t make it right. He has made me feel like a child, as he would make this foul stuff and stand in front of me while I drank it, and would criticise me if I left a bit in the glass.
I got the silent treatment last night until about 10:30. We have compromised. I said I will take it, as long as he puts the powder into capsules, so I can’t taste it. He still doesn’t and won’t believe that it’s going to make no difference whatsoever. I might be able to have a bit more control over tablets too. I put all my meds in pill boxes, and don’t get watched when I take those, so I can always slip them to one side.
If there was a miracle out there, chances are it’ll be someone else that discovers it, not me. I just wish that chocolate was the cure. It’s never something nice and enjoyable, is it!