not sure if the steriods are helping

New diagnosis and before diagnosis
1

hello. a year and a half ago i had a ‘MS’ attack. whilst it wasn’t diagnosed as that and was called an isolated event it was explained that from the MRI scan they found a lesion at the top of my spine. I was given a steriod drip and went home. The symptoms became worse for awhile and then eventually I recovered pretty much back to normal.

Last Saturday it came back, similar symptoms but instead of just my left side it is now my right side also. I went to the doctors who, after the third visit gave me five days of oral steriods to take, they’re a low dose I think, only 5mg. She made a referal to see a neurologist but that wont be for months yet.

I was yesturday starting to feel as though the symptoms were settleing down abit. But then a bad arguement with my boyfriend, who isn’t exactly being supportive or helpful, has left my symptoms feeling worse. Maybe because of the stress, maybe because I didn’t sleep much.

What can I do? Should I be on more, stronger steriods?

I can’t walk, have tingley legs, have a strange pressure headache, left eye ache, fuzzy hands, some strange head wobbely sensation. I feel terrible emotionally.

After my boyfriend walked out I’ve been on my own, no idea what to do, with the possibility that Im going to be diagnosed MS in the back of my mind all the time, and really have no idea what should be happening now to help myself.

It just feels to be getting worse.

Any advice would be amazing at the moment, I wrote on here last time it happened and it was a big help.

I hope everyone else is doing ok x x x

2

Hi Amyleetee, from my own experiences having been through some rough physical and emotional challenges (and now suspecting MS), I can offer a couple of suggestions that I rely on daily, to help you emotionally. I had some Reiki sessions years ago and it helped me so much that I became a practitioner and am now a Reiki Master (which just means teacher - there’s still a lot to learn!) The other thing that helps me is reading books by Louise Hay (amongst others but that is a good place to start). Learning how to think more positively and to actively choose better feeling thoughts has helped me cope with some hard life experiences. I continue to practice this every day, even just looking in the mirror and telling yourself ‘I love you’ can make a big difference. Repeat often! Wishing you well, may you get the support you need :heart:

3

regarding advice about reading books by Louise Hay:

My understanding is that Hay has a successful career based upon books / tv appearances / charity work wherein she explains / advises about the beneficial effects of positive thinking & self affirmations, often with an emphasis on how negative thinking impacts upon (or directly contributes to) physical health problems, and also how positive thinking / self love and self affirmations can improve psychological and physical well-being. She makes the case that many physical health conditions have their routes in psychological distress, and that the power of positive thinking therefore impacts on physical wellbeing. This appears a very positive approach, and I understand that there is definite benefit for many people in exploring such avenues.

However I am concerned about not taking such views ‘too far’. For example, Hay’s website states that her incurable cervical cancer had been caused by the psychological trauma of childhood rape, and that once she understood this, she became ‘well’ through a programme of self-affirmation, self-forgiveness, positive affirmations, nutrition and reflexology. The amazon synopsis of her bestseller “how to heal your life” states that the book makes the case that many serious physical conditions have their routes in psychology, and that by choosing positve thinking and behaviour patterns we can choose to become well. The book synopsis states that

“the probable cause of multiple sclerosis is “mental hardness, hard-heartedness, inflexibility and an iron will”, and that the healing pattern would be"to choose loving, joyous thoughts to create a world in which you are free”.

Now I have not read the book, (although I have seen Hays interviewed on tv) so I don’t know how acurate the synopsis is, but I do know that concerns have been raised with Amazon, but the book synopsis still stands.

I understand the value of positive thinking & complimentary therapies. But the views expressed by Hays (on her website, biography, amazon synopsis etc) for me, at least, push the envelope just that little bit too far, and I did feel that on that basis I needed to say ‘be careful’ about recommending her books.

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With any complementary therapy, including self-help books, you need to approach them sensibly. Complementary therapies are just that: complementary to a standard, medical approach. I have read the abovementioned book and as regards MS, that affirmation is the only thing specifically stated in the whole book. What I do recommend is learning more positive ways of thinking and nurturing those activities and thoughts that create good feeling, to support optimum health. I’d be wary of anything that claimed it was a quick and easy cure for (or relief from) anything but I don’t believe that Louise Hay’s work comes across like that at all. Still, Anonymous is right to be cautious. It can be too easy to be led to believe quick fixes. As a holistic practitioner I know that results are achieved through a frequent and consistent mix of healthy practices: diet, exercise, adequate hydration and sleep,healthy thinking, even before any therapy, holistic or otherwise, is undertaken. Wishing you all well x

5

Dear Amyleetee,

I think it really depends on what sort of person you are. If this is MS (and you don’t know that) there is no cure, whether you think positively or eat lots of fish. But there are ways that can help you cope, in particular with the uncertainty that lies ahead. I tend to be fine (psychologically) for weeks and then break down completely for a day or two and then get back to fine.

For some, that may mean religion, for others, the key may be self-help groups or writing thoughts down in a diary, for some that may mean positive thinking. There is also a wonderful book by Barbara Ehrenreich about how the pressure to think positively while dealing with breast cancer can turn into a contest (i.e. if you get sicker, surely you’re not thinking positively enough). Obviously, you can’t treat it like that. At the end of the day, we need to be clear that we don’t get healthy from positive thinking. But I can’t see what’s wrong with trying to make yourself smile every day. Holistic approaches, meditation and getting guidance on how to stay focussed on the present rather than an uncertain future surely can help a lot! Of course, part of this is also how much time and money you have to spare to get into this, especially since you seem to be in a crisis right now!

I think for now, the only thing that is important is that you need to calm down. Also, find ways to push those nasty thoughts aside for a bit. The problem is that it’s entirely up to you to figure out how to do this: if you need to read a novel you’ve always wanted to read or go on an online shopping spree. I’m guessing your symptoms also feel much worse due to the emotional stress. I usually feel better talking this stuff through with friends or family. Mostly, treat yourself to something nice today, whatever it is.

We’re all in the same boat and I think none of us really know how we get through it, but you’re so much stronger than you think! And even if you’re having a really bad day, that day will be over soon and tomorrow will be different!

On the topic of steroids: I’m on a 5-day course as well at the moment and not at all convinced. But I’m really not sure what to do about it, either, since I don’t know how long they take to kick in. I’ve got other meds to deal with my symptoms and they seem to work much better, though. There’s not much you can do today anyway (I’m not sure how much to trust A&E with this), so I’d go see your GP tomorrow if the meds still don’t work. But bear in mind that I’m not a doctor and have no experience being on steroids, either.

Good luck, I’m rooting for you to get through this!