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Barts Blog on PPMS

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”

Moyna xxx

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Moyna, ls there any chance you can get to see him - This is the first l have heard that DMT’s should be used for newly-diagnosed PPMS. Not so good for us oldies who were told 33yrs ago to ‘just get on with it’.

l am hoping the Biotin will keep improving my MS - and l am also going to look into B1- as well as B7. We all know about B12 being so important and VitD3.

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I think this is why they say early in ppms and spms hsct can be succesful​

early disease low edss and younger age apparently are all better prognosis although the success rates still vary between 50-75%

He is the Professor of Neurology at my local hospital and I have met him a couple of times. While he is definitely one of the good guys, there are still no approved treatments for PPMS and very little he can do until successful trials take place.

Frankly, nothing will stop me taking ldn, because after over ten years I am as certain as can be that it works.

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Hi there, I was dx with MS 16 months ago. PPMS & proscribed Baclofen. For many years I was Hallucinating, suffering severe Vertigo, Dementia & lots of other stuff. Paranoia, Fatigue, muscle wastage, shaking & spasms. I have suffered with chronic Hay Fever all my life. Now I’m questioned about being Schizophrenic. I’ve got my 3rd load of MRIs next week. After recently failing a deranged suicide on Antidepressants & I worry. I live alone with hardly any support & I’m tormented. Hopefully in a few months, I will get answers. 3 items were placed next to my heart & it concerns me. MRIs are odd sounds & I’m not sure what to do, as I was released into care. I get no answers to questions. My entire body seems to be having problems. Cramping, MS hugs, Urine problems & toilet issues. The list is endless. I’ve tried so many different ways to combat what’s going on, but no joy so far. Vitamin D3 & numerous things seem to help. I take so many Baclofen now, I’m like a zombie most days. Always feeling like I’m being watched & mocked. I’m told, I can’t drive & my walking is painful. I feel like a bag of gravel. As I write this, I’m looking at a wheelchair brochure. Is this a joke? The next time I can’t breath, will I choke? This VE day seems significant for some reason.

Monya I see prof g and travel a few hrs to see him, hes not local to me. After reading the blog i decided he was the neuro for me and asked my gp to refer me to him. I now get my care, drugs , through him and see him every 6 to 12 months. I still am under my local hospital but I basically just take the advice from barts. Pm if you want to chat xxx

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Puddle,

l am also PPMS - its now 33yrs. l too was prescribed Baclofen - many years ago - with disasterous results. Recently, l joined the facebook group Biotin for Progressive MS - and people globally have joined. And we have all started to divulge what meds we are on - and what meds we found did not work.

Many of them do take LDN. And so many have said how awful their lives were on Baclofen. So it has been enlightening - hope some of the Neuros/GP’s read it.

LDN seems to get the thumbs up in this group. l know Whammel agrees. And it was him who l have to thank for starting LDN - about 8yrs ago.

So l am now taking high vitd3/b12/b7/ magnesium/vitk/ and doing better than l have for a long time.

lf l had continued to take Baclofen - l would have been full-time wheelchair user. And l would be like a cabbage - or Zombie like as you say. No way could l have driven a car in this state. And l feel strongly that drugs like these should not be giving to people who intend to drive. lts almost as bad as drunk drivers.

Your life right now - sounds cr*p - and it needs to change. And change for the better. Have you ever rang the MSS helpline - that would be a start. Hopefully, you will get some good advice from others.

Keep talking on this board - and between us all - perhaps we can help you turn the corner.

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I am like Derek there is no way i would stop LDN as it is the only thing that works the rest made my MS worse, however regarding early discovery it would,nt work for me as i was very healthy prior to my diagnose, never was near a doctor , then thought i has pulled a muscle in my leg at the gym to be promptly told three weeks later i had MS.

trish

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Puddle what an extremely hard time you are having.

I don’t know what to advise. It’s worrying that you have no support. Have you spoken to your GP about attending a day centre? Maybe having a bit more human contact would help.

Want you to know that I’m thinking about you and hoping that today is a good day for you.

Pat xx

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