SPMS

A progressive disease is one that gets worse

A progressive disease is one that gets worse

A progressive disease is one that gets worse. Perfectly true but for an awful lot of them it’s in an unpredictable way. Will it progress quickly or slowly? Is it predictable? What are the consequences? Inevitably this leads to a lot of anxiety, sometimes even depression and worry. Doesn’t this sound like multiple sclerosis? I […]

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Multiple sclerosis has its lesions and inflammation

Multiple sclerosis has its lesions and inflammation

Just when you think there is a glimmer of hope, a tiny twinkle of light at the end of the tunnel, it is surprising how easily that little spark of optimism can be extinguished. Life with nearly every single Long Term Condition can be really rough. Multiple sclerosis has its lesions and inflammation. This causes the […]

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#ThinkHand Campaign for Advanced Multiple Sclerosis

#ThinkHand Campaign for Advanced Multiple Sclerosis

I attended the launch of the #ThinkHand campaign for advanced multiple sclerosis by Barts MS Health at the Bankside Gallery in Southwark on Thursday 22 February. I have advanced MS and this is a big step in the right direction. My multiple sclerosis I can still walk, but it is a very slow walk and […]

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Who am I

Who am I

I am Patrick and run this website and I was born in 1954. These days I have advanced multiple sclerosis; I try to lead as active a life as possible but balance and walking problems get in the way. Also I am not allowed to drive because of double vision, another kind gift from multiple […]

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Progressive multiple sclerosis treatment

Progressive multiple sclerosis treatment

Options for progressive multiple sclerosis treatment are non-existent. If you have recently been diagnosed with MS then there are treatments available to reduce and even stop progression. That is fantastic news but it is too late for so many people. I am one of those people If you have progressive MS then the outlook is […]

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48 weeks so I am almost half way there

48 weeks so I am almost half way there

I started the MS–SMART trial on January 7th 2016 and I take the MS-SMART pill twice a day. Its now 48 weeks so I am almost half way there. This two year trial is looking at 3 different drugs to find out if there is some neuroprotection in any of them. 48 weeks so I […]

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Why multiple sclerosis makes me anxious

Why multiple sclerosis makes me anxious

Multiple sclerosis is a scary disease. It’s progressive and unpredictable.  As it progresses you become less capable of undertaking physical activities. You are very aware of its progress. It is no great surprise that sufferers are apprehensive of what the future holds for them. This uncertainty is often the cause of stress and anxiety. Why […]

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Keeping the grey matter active

Keeping the grey matter active

I hope that this is a bit of a fun. How many times have you had to do something that’s looked easy? Then you realise that you need to think quite hard. Its called concentration or keeping the grey matter active :-0). Its called the Stroop effect Picture 1             […]

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MS-SMART and Anti-LINGO-1

MS-SMART and Anti-LINGO-1

At long last drugs are being tested to help slow down progression of SPMS. There are two trials in Phase 2 of the testing cycle. There is a good possibility something positive will be the result. The MS-SMART and Anti-LINGO-1 trials represent a real hope for us sufferers of SPMS. Each trial is evaluating how […]

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MIS416 A New Drug For Secondary Progressive MS

MIS416 A New Drug For Secondary Progressive MS

MIS416 a new drug for Secondary Progressive MS. It stimulates a range of responses in the immune system and it is being tested to find out if it is an effective treatment for SPMS. The drug is based on teenage acne bacteria; it can fill an adolescent with anxiety over a face full of blemishes. MIS416 is […]

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A Short Video – Me and My SPMS

A Short Video – Me and My SPMS

Below is a short video of me taken recently after a networking meeting. To watch the video click on the picture     I know full well that after a diagnosis of MS you may well feel shell shocked, devastated, depressed or even as if the world around you has collapsed. Despite the diagnosis MS […]

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Second infusion

Second infusion

Today I went the Royal London hospital and had my second infusion. There was not a lot to report since my first infusion. I have not noticed any difference in the last 4 weeks except that my double vision has got worse. This time there was just one test. I was shown a list of […]

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First Infusion 4th September

First Infusion 4th September

The infusions are to done monthly and the first one must be within 6 weeks of being accepted for the trial. I was accepted on 26th July. The first infusion It was set for Tuesday 4th September, cutting it a bit fine, but hey-ho I made it. I was told the first day would be […]

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Ascend Trial, the screening

Ascend Trial, the screening

MS is a progressive autoimmune disease and so far no cure has been found. It is devastating; you just gradually lose the ability to control part or parts of your body. Ascend trial, the screening My left leg has no strength. generally speaking from the wast down I’m a bit of a disaster. At least […]

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