I was diagnosed with mild MS in June this year, my only symptom being a blocked left ear, being off balance and fatigue. I have 3 lesions but the only one that’s caused me any problems to date is the brainstem one. I got it in late pregnancy and after a time when I had finished taking antibiotics. I’ve just seen the doctor today who’s told me I have a throat infection but can’t tell if it’s viral or bacterial. I have been prescribed antibiotics for 10 days and am reluctant to take them because of my belief that they may have kickstarted my MS. I was just hoping for some advice please, what are your thoughts? I tried to speak to my MS nurse but she’s now on a well deserved holiday.
no proof antibiotics cause MS. been debunked many times.if its viral the antibiotics wont do anything but if its an infection they will help. a simple infection can lead to many problems if you don’t do anything, simple infections left untreated have killed people (not trying to scare monger but it has happened, seems to be happening a lot lately :/).
Thanks both, I guess I should start taking them then. I still have a temp of 38.1 so although better than yesterday not back to normal so guess a sign that my body is fighting an infection.
I doubt antibiotics themselves cause MS. However (and many may disagree with this) all autoimmune diseases have been linked to poor gut health. And what causes poor gut health? Antibiotics! Ok so I’m not saying you should never take them, but please make sure to balance it out with a good quality probiotic. Hope you feel better soon xx
I remember my sister in law in the US went on and on about taking probiotics in pregnancy particularly when I was given a huge amount for a kidney infection and chest infection in pregnancy, I took yakult as wasn’t sure what else to take. Anyone know of anything? Also, does anyone else on here suffer with fullness in ears? Apparently, I’m not a “classic” case of MS. I’m starting to feel anxious as haven’t had a MRI since May and my last lesion appeared between the previous December and May so I’m worried that it must be time for another! Live in constant fear that I’m going to be struck down although I’ve been told by a consultant that the first lesion is usually the worse.
To echo what has just been stated by lisaC and indeed, by my own neurologist… there is tremendous ‘excitement’ among MS professionals when regarding the relationship between gut flora / fauna and the onset or a person’s pre-disposition to MS.
But with that said, a recent dose of tonsillitis saw my munching anti-bios for a fortnight with no (known) MS type consequences.
However now, as a general course of good practise, i am eating sauerkraut whenever i can in order to get the belly populations back in order.
It seems to me that whatever infection you had back then is more likely to have been the final trigger for your MS than the anti-biotics you took to deal with it.
I have no expert knowledge whatsoever, but my personal view is that, if whatever bad alignment of circumstances opens the door to MS, then we are going to get MS. Whatever specific thing finally lights the MS fuse is neither here nor there - if one infection or trauma or period of illness or loss had not triggered it, the next one would have.
Please do not worry about anti-biotics. They are your friend and, when you have MS, infections that raise your temperature and make you unwell are not your friend at all.
What’s DMD? Because my MS is so mild they don’t feel it’s necessary to give me MS meds. I’m on meds for my ear symptoms-Gabapentin, Amitriptyline and Citolpram.
Many people consider that once diagnosed with relapsing remitting MS that a DMD should be started even if your symptoms are mild at the moment. Although of course it’s possible that you have progressive MS? If it’s RR, you could take some advice from your MS nurse about DMDs. Some people have, as you’ve described, relatively mild symptoms and yet hit their MS with the strongest drug they can get hold of in order to stop it getting worse.
You’ve said that a consultant told you the first lesion is usually the worst? I’ve never heard this before and I doubt very much that it’s true. In some cases it may be correct, but I’m sure not in all. My first was definitely not my worst.
However, it does quite often happen that in the first years (or possibly forever), relapses are mild and relatively infrequent. So don’t worry that you’ve not had a relapse or indeed an MRI since May, you may not have either for a good long while.
And of course, don’t forget that while you’ve been told your MS is not a ‘classic’ case. It could be said that no ones is classic. We all differ in many respects, maybe sharing a symptom or two, but we differ in our reaction to drugs, our symptoms, our remission times, almost every way.
Hopefully I won’t get any worse, got to stay positive. I managed to get referred to the national hospital in London and they were amazing. I’m seeing a local consultant in January so will discuss DMD with him, see what he says. I found out from he London consultants that eating walnuts is good as they are the only food that contain myelin,
I have to agree with a lot of the comments here. There are several diets out there but with no proven MS cure, please don’t waste money on any silly books that claim they can be that - Paolo is quite correct in hs choice of words, quite specifically that “may help promote”. A sensible diet is never a bad thing and I packed up smoking as soon as I was diagnosed.
Antibiotics are ok a are most vitamins etc. I think the only thing I heard should be avoided is echinacea as we don’t need to egg-on our immune system any more than it already is. D3 is an important one but get yor levels checked before taking any daft levels of it as too much can be bad too apparently - my neuro suggested 1,000-2,000 iu daily but was categoric that i was not proven to be of benefit.
I have read a few things about it now being advised to get newly diagnosed MS’ers onto a DMD as soon as possible - I think the rules are always being updated tho so taken it easy, being diagnosed is an emotional shocker anyway - this is a great website for some factual info and support is great on this forum
My neurologist won’t consider DMDs as he says my ms is not bad enough to justify drugs with strong side effects that would b worse than the symptoms I currently have, and in àny case I may not have a major relapse. For better or worse he operates a “wait and see” policy! He’s known to b conservative in his approach , so it’s meds for symptoms only.
B…cks- myself personally been on Rebif then Tec and no horrible side effects. All research out then says DMDs do good with MS. I suggest your Neuro is just concerned about the cost.
In some countries I believe as soon as diagnosed with MS straight onto DMDs. Now this makes perfect sense to me to try to ward off future problems which could not only be more costly but affect quality of life.
Neuro says may not have a major relapse - can he see into the future?
i would ask for a second opinion with another Neuro who specialises in MS
Good luck - this post is really just a reply to carrot cruncher - apologies to the original poster
You should tell your neurologist to sling his hook. Any one of us ‘may not have a major relapse’ but frankly, i don’t want a minor one!
Every relapse, big or small can create damage which will never be recovered from. If a neurologist states that a DMD might cause greater side effects than the symptoms currently being endured, then they have just confessed to being full of 5hit!
I am on tecfidera. The side effects are zero. When some side effects were encountered in the early months, they were quickly and easily dispelled. It is true that i might never have a major relapse, but thanks to my taking tecfidera, that chance no matter how slim to start with, is reduced by perhaps a further 50%
For me, a diagnosis of MS is like a ticking time bomb; We all live with an inability to foresee the future… but with MS a relapse and the resulting potential for permanent disability is ‘when’ not ‘if’. As my current set of symptoms are ‘mild’ i might presume to be able to continue on with a lifestyle of my choosing for another 15 years… with tecfidera inside me, that suddenly becomes closer to 25 years… and who knows what sorts of therapies and (dare i say it?) cures might be available to us by then?
I personally feel that those adhering to the policy of ‘wait and see’ should be named and shamed. Simply disgraceful.
Hi and apologies to the original poster - there was no intention of a ‘take over’, but thank you to Paolo and Min for your replies to me.
Paolo, am I right in thinking you’re in Canada? I guess things are quite different to here in the UK, where the NHS appears to be falling apart and everyone is conscious of their budgets!
Yes Min, I too have read that in other countries DMDs are prescribed on diagnosis and I did have a conversation with my neuro to that effect. I may ask for a second opinion, but at the moment I’m relatively OK with the ‘wait and see’ approach - although I recognise that would not be right for everyone.
