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Just diagnosed

Hi All,

As expected, I have just been diagnosed. The Neurologist wants to put me on Tecfidera.

My questions to more experienced members here is:

  • Is there anything you think precedes a relapse?

  • Are there any signs before you relapse?

  • Is there anything that can be done (except taking DMT’s) that might prevent a relapse?

  • How many relapses do people have on average?

  • How long in between relapses?

I have technically had three relapses in around a year. The first two, were so minor, I really can’t remember what was going on at the time. The third one was ON and I was very very very unhappy/stressed/not taking care of myself.

Also, what does everyone think about ‘other’ treatments? like Vitamin D ? or other supplements? Diet changes etc?

Lastly, I feel a bit suspicious of large pharma companies. Does anyone else feel like maybe there are other ways to treat this? and that these ways are not mainstream, as they do not involve the big pharma companies?

Sorry if my post offends anyone (especially the pharma bit). It’s just running through my mind and I would really appreciate opinions. I will go the pharma route for sure, but I am just wondering, as I have heard/seen so many different testimonials that tout other treatments (Coimbra protocol) for example.

Thank you,

Emily

Hi Emily

Not quite at that stage yet but will follow this post with interest.

All the best

x

I am sorry about your dx.

In troubled times, it can help to do the sort of triage that they do in A&E - identifying the most critical things and dealing with them first before working through the others. Sounds as though you are doing exactly that with getting on the right DMD for you as the priority. That’s the best possible start, I think. I hope you get on really well with it.

Beyond that, if you’re looking for a new hobby, there are a hundred variously demanding and restrictive regimes you can put yourself on in terms of lifestyle change. We all have our favourites because we feel they do us some good, but we are each of us a sample of one (or at best a small group of anecdotes), and none of us are you, so I’m not sure how helpful others’ experiences are in that regard.

So your best bet for starters, I think, is to follow the sort of advice on healthy living that applies to most people - balanced diet, not too many bad habits, plenty of exercise, finding ways to unwind and calm the mind etc - all the usual stuff that you (and the rest of us) should have been doing already. Sorry for being so boring.

Alison

Alison is exactly right, it’s hard to get focussed when all you’ve got racing round your head is questions, anxiety and random bits and pieces which don’t exactly make it easy to get your life back in the order it presumably was before all this started.

Generally, it is agreed that starting on a disease modifying drug early is the best option. Of course there will always be people who recommend this or that diet instead of putting your trust in big pharma. All I can say is that many millions of pounds, dollars and euros have gone into testing and trialling DMDs. The same rigorous trials have not always been done on diets.

Taking vitamin D is generally thought of as a good idea. But to be safe, have your vitamin D level tested, either before you start taking it, or at least a few weeks later to make sure you aren’t taking too much. I take (on the advice of my neurologist and MS nurses 5000 international units per day. I’ve had my vitamin D levels checked and they’re OK.

In terms of warning signs of relapses, nope, I can’t say I’ve ever pinpointed anything. Just one say I’ll start to feel something’s a bit different. (I actually don’t get relapses any more, I’m now progressive after 20 years.) And as far as measuring your relapse rate against someone else’s, MS is far too contrary for that to be worthwhile. Everyone is different.

And certainly Tecfidera is a good DMD to start with. In fact there was some research (which I can’t now find, sorry) that it’s most effective when it’s the only DMD a person has taken - as opposed to having tried several before stating Tecfidera. So beginning on that is a good start. This is of course just my opinion.

The only other thing I would say to anyone at the start of MS is to get and stay as fit as possible. In particular, get your core muscles as strong as possible. It will pay dividends later if you do continue to relapse regardless of your approach to therapies and drugs. So if you don’t already regularly exercise, try to get a referral to physiotherapy and start some kind of exercise regime.

Sue

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Hi All,

Thank you for your responses. I will take the advice on board and start getting my core strength up. I actually have lower back problems anyway that I need to sort out too.

Emily

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If progressive the Whelon Treatment can be/is(?) - I am not up to date on other cases - very successful at stopping all attacks or at least was for my wife who has had no relapse in nearly eight years. Find out about it on-line.

Progressive MS is caused by a bug called Chlamydia Pneumonii. It can be cured by administering the right anti-biotics in sequence. Cure relates only to the cause and not existing scarring although some regression of this may occur…

Note to the OP and anyone else: in my view, it is a good plan never to give your credit card details to anyone offering to cure (or nearly cure) your MS.

Alison

Um can I just make a couple of points here?

I cant find the ‘Whelon Treatment’ anywhere, although I have found an herbalist called Richard Whelan who makes claims to help a variety of disorders. But he doesn’t include MS on his list.

There is someone called FJ Whelan who wrote a paper about brain injury.

If you can provide a link to your information that might help

In progressive MS relapses are not part of the disease pattern. So it’s not surprising your wife with progressive MS has had no relapses.

Progressive MS is definitely not caused by a bug called Chlamydia Pneumoii. Chlamydophila pneumoniae has apparently been found in the cerebrospinal fluid of some people diagnosed with MS but there is no way that you can categorically state that it is the cause. Neither is MS curable with antibiotics. See https://www.mssociety.org.uk/ms-research/research-blog/2014/06/infections-and-ms-whats-evidence for more information.

Sue

Sorry it should read Wheldon. The ‘d’ was missing.

Well some of the scientific literature says that it is and the treatment, devised by Wheldon, is highly regarded by researchers at the relevant Universities. Also by me

It is easy to find (or was) with the right spelling.

It has worked well for her.

Progressive MS is definitely not caused by a bug called Chlamydia Pneumoii.

No it isn’t: Try: Chlamydia pneumoniae

http://www.davidwheldon.co.uk/ms-cpn-qa.html

The above link might help. There is lots more on this or was.

The causative agent of progressive MS is treatable with anti-biotics. It can be stopped but scarring has limited regression. the earlier the treatment begins the better the outcome.

Agreed. Fortunately the progressive MS treatment which ends progression i.e. attacks (or relapses as some call them, perhaps erroneously) was free as far as my wife was concerned as Wheldon took her on pro bono. He is retired now so this may be unlikely today. I seem to recall she paid for the anti-biotics but these are cheap (e.g. metronidazole). In fact I suspect metronidazole would be a good test for a Progressive diagnosis as there can be bad reactions to the endo-toxin release.

Wheldon was/is not just a medical doctor but also a researcher in biochemistry and or cell biology or similar. He worked at Bedford Hospital.

He is no quack, rather the opposite.

Warning: Metronidazole on its own will not work. Check it out.

Neither is MS curable with antibiotics. See https://www.mssociety.org.uk/ms-research/research-blog/2014/06/infection… for more information.

My experience is that Progressive MS is indeed curable with antibiotics. The assertion that MS is caused by CP (like ME also) is one made in the scientific literature and NOT by me. The treatment was devised by a scientific researcher and qualified medical practitioner. In my limited experience it works fully as described (in my case in person) by Dr. David Wheldon.

My experience is limited by number of cases i.e. ‘ONE’ !! However this means that I KNOW that it WORKS - if only in one case!

The only reason it is likely not to work in other cases might be genetic. I feel but do NOT KNOW that this is unlikely as the ABs attack the bug… so er it is unlikely!

BTW I do not trust medical charity web sites. Extensive experience has taught me they are utterly corrupt and in the pockets of the medical industry which profits from and has a vested interest in causing and not curing disease. I suspect this is the case with the MS Society but I do not know…

In progressive MS relapses are not part of the disease pattern. So it’s not surprising your wife with progressive MS has had no relapses.

Yeah, sometimes visiting nurses talk about relapses to her even though she is (ex)-progressive. She has had some recovery in upper body strength since the Wheldon treatment was used but there are no attacks. No advancing blindness, weakness. Also she has given up antispasmodics…

I think if progressive MS could be cured by antibiotics, it might have caught on by now. Perhaps il mention it at my next neuro appointment, mmmmm!!!

tecfidera is a good DMD but it needs careful planning to avoid side effects.

i used to vomit within an hour when i first went on the higher dose (week 2) but i found that eating before and after the pill worked for me, sort of trapping it between 2 lots of food.

eg cereal, tecfidera, toast.

an anti-histamine can prevent the flush (i look like an oompah loompah with a bright orange face).

maybe a paracetamol too.

the side effects go away after a few weeks.

good luck

carole x