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3 years ago

@gareth1987 , welcome to the cheap seats in the MS World.

Yes, I was informed back in 2010 that I’m now Secondary Progressive (SPMS). Has it made much of a difference? Well I was able to stop sticking needles in myself! Also, I’m not supposed to have relapses anymore, just a gradual progression.

But, I do see it as one of the cheap variants of MS. It allows the medical professionals to look after their budgets, as there’s no treatment for us.

Having said that, there is no doubt that there is a postcode lottery out there. A total lack of consistency.

What I would say, is just look after yourself. A decent diet, a bit of exercise and just “go with the flow”.

SPMS is like any form of MS, which is a pain in the butt. We just have to put on a brave face and live life the best we can.

3 years ago

yep i have spms too i was diagnosed last year i think may be the year b4 lol 2014 is just a blurrrrrrrr lol

3 years ago

I share your joy at having suckdary prog. I have just returned to work and they are treating me like a poor soul. Hey ho

I’m an spms person…….rubbish isn’t it, be nice to have some kind of medication!! Just got to try to accept it and make the most of life!

Not saying i’m doing that myself but the theory is there!!

3 years ago

I’ve looked at the fluoxetine trial in progressive Ms
Which might be worth a look at? Plus itll help your mood inguess

3 years ago

Hi Gareth,
I am secondary progressive have been for the last 3 years. Yes Its a real b*****d but unfortunately its the cards we have been dealt! Its very early days for you yet and I know to well Its very scary but every day is one more day and you just have to keep going! As stumbler said there is no treatment and yes that does take a lot of getting used to as you feel totally abandoned and left on the shelf. My only advice to you is don’t waste time feeling sorry for your self! Make plans and keep to them. Don’t push yourself too far as you will have trouble recovering, eat well, rest well and above all else just have lots of fun with the friends and family you love.

3 years ago

lts now 33 yrs since l was diagnosed with SPMS. And now l cannot walk unaided – mainly due to arthritis in what was my ‘good’ leg. The years of over-compensating – struggling to walk – has caused abnormal wear and tear to my right leg. So now – after a replacement hip and knee – which have not been the success l hoped for. l am now more disabled by osteo-arthritis then the MS l have batttled with all these years.
5 weeks ago – l started taking Biotin B7 and Thiamine B1. l joined the facebook group Biotin for Progressive MS. ln 4 weeks they have over 1000 members. All very interesting people from all over the world. We have sourced pure pharma grade Biotin – and are trialing it ourselves. Most of us have noticed a rise in energy levels and less fatigue. Some have had better bladder/bowel control. l have been walking better – even my dead foot has decided to start moving. l can now wriggle – only a bit – my toes. lts early days – but so far we do have some hope of an improvement in our conditions. B7 – is not a drug – is water-soluble – so no risk of overdosing. And it is cheap – l paid £120 for 333 days worth. Measure it out on micro scales – onto rice paper- which l can put straight into my mouth to dissolve. 0.10g x 3 times daily.
Over the years – GP/Neuro’s have prescribed meds which l could not continue taking because of the side-effects. Why take something that makes you feel worse! Baclofen was the pits – nearly put me in a wheel-chair full-time. For many years l have taken LDN – and Sativex plus a high dose Vitd3/B12 – Now B1 and B7. l do feel that B vit supplements are important to us – in a high dose.

3 years ago

Hi well worn
I’ve read of a lot of people using biotin and sourcing it from the U.S.
I also spoke to the MD of medday the company who are producing MD1003 the actual drug, who say once they have their phase 3 trial for optic neuritis done they expect to get it approved
How have you found the LDN
Do you feel it has slowed anything for you?

3 years ago

LDN has so many benefits. lt boosts endorphins – gives you a more positive approach to life. Which, in turn, helps with day to day life. Helps bladder control – fatigue- brain fog. So cuts out several other meds that would probably cause too many side-effects.

l think that the LDN has stopped progression – l am certainly much better than l was for taking it.

3 years ago

BIIB033 for remylenation. Thanks for mentioning LDN. I’ve been using it for years. Dicksons chemist in Edinburgh or QM specials in Ireland. Easier to get than you might think. FInding Dr. Gilhooly, less so. See also, Linda Elsegood.

3 years ago

@wellworn where can one get good vitamin B7 in high doses? No pharmacy here has anything more than the usual dosing – and that mixed with other vitamins and minerals so it is impossible to increase the dose without taking crazy amounts of other things :-(.

3 years ago

Bulk US and Pure US also all have the pure powder. Don’t go down the over-the-counter line. Too many additives and fillers. And with the 10.000mcg tablets you would need 30 a day. The amount of powder Biotin is tiny that you take – and you need micro scales to weigh it on – the type that they weigh gold etc on. l got mine from amazon – Smart Weigh. Place rice paper on the scale first so that l can weigh the powder then put it in my mouth to dissolve. This was a tip l picked up from somebody on the group.

100g cost me £120 including the shipping and will last me 333days. Not bad is it!!

These companies are having to keep restocking as they are selling out very quickly. But they soon re-stock.
lt is not scarce – Although MedDay are trying to patent what they used on the trial – typical – trying to make a fortune out of the people who are suffering.

Neuros – will also try to get on the band wagon – they all make money from pharmaceutical companies by prescribing their drugs.

The CEO of MS Society US – is paid more then the US President!!
l am not cynical – just realistic.

3 years ago

I have had MS for 35 years. I have used HBOT weekly with benefit for 30 years. It is NOT a cure but it helps in the management of symptoms and can slow down the progression. HBOT is simple, safe, inexpensive (in the UK) and without any significant side-effects.

Multiple scleroses simply means “many scarrings” or lesions – causes unknown. It is not a diagnosis. It is a definition of the pathology. The disease remains a mystery and causes unknown.



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