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Trial for PPMS looking for recruits

Looks interesting:

Pat xx

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I like a LOT! If not for my current circumstances, I would definitely have been signing up

It’s about time

Sonia xx

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Thanks Pat. I had high hopes for this drug and wish I could have tried it. I fall into the exclusion list but fingers crossed there’ll be something else new. The fact they’re looking at us for a change is positive.

Cath x

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There is currently an article on the blog about when does progressive MS start and the following is a direct quote from Prof G, the main guy. I would really love to see him as a patient as he is so proactive. Has anyone seen him ?

“By the time PPMSers present they have probably had the disease for quite a long time. We need to try and diagnose PPMS ASAP and realise that we are dealing with two processes; (1) inflammation and (2) neurodegeneration. We therefore need to go back to the drawing board with our trial design and starting planning combination therapy strategies to tackle PPMS. I am not in the camp that thinks PPMS is an intractable problem. And yes I think PPMS will respond to highly-effective DMTs if they are started early enough and the trials are done long enough to account for therapeutic lag. However, anti-inflammatories will not be enough we will need to add neuroprotective drugs on top of them. An obvious combination supported by data is rituximab and laquinimod”

Laquinimod is the drug in the trial. Rituximab is an anti-inflammatory used currenlty in arthritis.

Moyna xxx

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Hi Moyna, yes I read that too. Agree he’s great. Really good attitude to finding treatments.

I think many of us on here had symptoms years before we realised something was definitely wrong and we went to GP. And then of course many who wait years for a dx.

I also agree with the Barts blog that said that PPMS might in fact be SPMS but people had a very mild course of RRMS & so weren’t dx until it became SPMS.

I think one problem is so many symptoms are put down to anxiety or ‘putting it on’. I don’t know if this is down to laziness of GP’s, or budget restrictions on getting MRI scans etc, or that they see so many people with unexplained symptoms they get used to thinking it’s nothing serious.

All very complex… but interesting.

Pat xx

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Hi folks. I was told PPMS 16 months ago. I’m due an MRi soon to investigate the frontal lobe. Been feeling very odd lately. Spasims & seriously dizzy spells. I’m hoping for the best but who knows. I’ll be sticking on the Baclofen until told otherwise. Let’s all hope things turn out right. I’m dreading the next appointment.

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I agree with you Pat. I’m sure many, if not most of us are SPMS but never got a dx or were not suspected of having ms previously. Especially when you consider how much we’ve had to deteriorate before we were taken seriously or how long many of us had to wait for a dx.

I know there are articles that disagree with this theory but in my case I’m certain it is, but as it’s not going to change my symptoms or treatment I’m not going to scream and shout about it. If I thought my dx of MS was incorrect I’d get the boxing gloves out but I’m certain they weren’t wrong on that score.

Enjoy your weekend everyone.

Cath x

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Hi folks

Not taken seriously, I was so furious with my GP I changed and left her in no doubt about how I felt. I almost got an apology, she now treats people with a variety of symptoms i.e. me very differently! This was 2007 have I got over this useless anger, honestly not really

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Hi folks

You might be on to something there. I was originally dx PPMS until I explained my various mild symptoms over the years and then he said it was SPMS. What I am saying is it is only a label fact is it is progressive whatever you want to call it.

Mags xx

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l really like Miranda s blog - when you look at it just type Biotin in the search section and read that - its about the Biotin trial.

l am having some good results from taking it for 4 weeks. A couple of the men on the facebook group Biotin for Progressive MS - have surprising results. A re-awakening of sexual desire - in the mornings. l know - too much information. But as one chap said -he really thought that part of his life had gone. Now he has a permanent grin on his face. l don’t think this was reported from people on the trial!

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l agree - that we mostly have SPMS - as l think we can nearly all have suffered symptoms in the years before hand.

l had shingles/vertigo the year before my original bad episode.

Hi spacejacket,

I had symptoms for many years but it was shingles / vertigo that finally got me to the doctors… and then the chronic fatigue which I have suffered since.

I think shingles… which as we know can be caused by stress… are a response to us pushing ourselves through fatigue and other MS symptoms.

So although not connected to MS they are a immune system response to MS.

Pat xx

I’ll sign up (after I see my latest MRI results in 2 weeks) It’s a slow process. Waiting around (12 months at a time) for results. Not good. Some people see everything in a few months (Tormented Terry). I forget about important *MS questionnaires. Which are sent to the wrong address. It’s a joke to some people. Whilst some rave all night, others are getting mashed, by pulsing electro magnets. Take it easy folks. I’m scared for life.

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