Are there others out there who have been diagnosed but are not on any medication as they have not had clinically significant symptoms…and do you feel it is the right course not to be on any medication?
I’m a bit unclear as to whether the minor symptoms i have (numbness, tingling, aches) are cumulatively building up damage which could be reduced if I was on medication.
Also for others in the same situation…are you trying anything else such as diet and are you finding it helpful? I have asked my consultant and a dietician about a low sat fat diet but they said there is no evidence to support benefits. On the other hand certain writers / online commentators are evangelical about the benefits and would put the fear of God into you about the consequences if you don’t follow this regime.
Exercise and Vitamin D are being pushed heavily as beneficial and I am doing my best to follow both, but it doesn’t seem like a lot to be doing.
I’ve just written this in another post: I’m struggling with the very same question as you, but seeing as there is no way I could completely stick to either diet [two different recommended MS diets including the low sat fat one], I have cut out milk (apart from chocolate) and cut way down on meat. Along with my meditation and exercise I am feeling as good as I have done since getting my first MS episode in August, so I will stick to this for now. I’m also on gabapentin though for nerve pain and I am likely to go on DMDs shortly, so I don’t think I am in your situation, apart from wanting to hold off relapses obviously. I do take a vitamin D supplement but I’m unsure what I should be taking really. I need to sort this out.
I wasn’t on any medication for nine years until I had two significant relapses effecting me physically. Prior to tjis symptoms were and still are sensory in addition to the weak left leg. Whether this was the rifht decision I’m not sure but if the meds could’ve prevented the damage to my leg I would have wanted them. Hope this helps in a way. Xxx
Hi, I was dx in October 2012 but have probably experienced the first symptoms of ms at least twelve years previously. I am not taking any DMDs and unless things change significantly I don’t intend to start them. I did start taking Modafanil for fatigue about a month ago but I am still undecided as to whether it is of much benefit. I have certainly found that the biggest thing that helps me is exercise. I attend the gym about three times a week and also go to an otago class once a week. I am definitely more tired when I don’t exercise than I am if I do. I do also take a vit d3 supplement. A M
I have been diagnosed for 12 years. I’m not on medication and my only symptom is truncal (?) ataxia - also know as drunken sailor walk and thats only when I’m tired or have exercised too much. I have permanent pins and needles in my legs.
I don’t have a special diet (although I could probably do with one to shift a few pounds or should that be stone) and I bought a stick recently although it has only been used once after a 2.5 hr traffic jam to the airport stiffened my knee but I still had a suitcase to pull & bags to carry. I only needed it for about 20 min.
I do think that exercise helps immensely. I also go belly dancing and I firmy believe that without my dancing my co-ordination would have been much worse.
I have in the past referred to myself as an MS fraud - I have it but I am one of the very lucky ones in that it does not really affect my life.
I was diagnosed almost a year ago and I’m not on DMDs either. Apart from the first relapse when I was diagosed I had two mini-episodes that weren’t ‘proper’ relapses according to my neuro.
My main symptoms are tingling, buzzing, fatigue, neck stiffness and pain. Oh and anxiety, which is the worst. I started fluoxetine (an antidepressant) a couple of weeks ago.
Exercise definitely helps me for my fatigue, but it makes muscle stiffness worse so I’m in dire straits to be honest.
Just like you, sometimes I wonder whether the fact that I’m not on DMDs will affect my condition in the future, but well, there’s nothing more I can do about it.
Hello, I am on the other side of the fence. Dx last nov with rrms after 3 'episodes in 4yrs. Only lesion seen so far at c6/7. I started on betaferon 6 weeks ago, I know it’s all new to me still, but am wondering, as my episodes were relatively mild, a little leg weakness and lots of sensory issues, if I have done the right thing on going on the betaferon? I am told it can lessen the effects /severity of any other relapse but still feel a little ‘strange’ injecting every other day. Best widgets Sue x
Thanks for your replies. I would love to be a permanent MS fraud if it would be possible to be so lucky! Have my first MRI in 2 and a half years in June and am very nervous about the results…when I had the last one I hadn’t been diagnosed yet and MS was still very much a worst case scenario that even the neurologist didn’t seem to think I had. His incompetent assistant nearly cancelled my lumbar puncture and if I hadn’t strenuously I might not have been diagnosed at all despite ongoing tingling and numbness…