I'm checking in a bit late too :)

Hi all, I hope you’re all well and apologies I’ve been a while. Truthfully, I’ve been pre-occupied and with a bit of a stress head etc. I managed to get the sack from my last contract, anyway putting that all aside, lots has been going on.

I saw a consultant in London a few weeks back and explained some stuff to him that was not really considered when I was diagnosed and after what, 3+ years, I’m still under gastroenterology with no actual diagnosis or dismissal… colonoscopy again next week (which might even prompt the doctor to even tell me I had Crohns as that’s what happened last time!) but my biopsies don’t match it. I even had the capsule endoscopy which also suggested crohns but they won’t diagnose. I think they’re just gonna do even more biopsies this time around

So, the jury is still out on that one. Anyway, after I explained to the consultant why I felt I might have an element of RRMS in there, he basically suggested a more drastic approach was in order and we discussed 3 DMDs, nothing wimpy tho, I went to see the MS nurses there for the required JC virus test. I see him tomorrow to discuss further…

So the AMAZING bit is that I had a call yesterday from a doctor who’d seen my MRI and it appears I qualify for a trial… I’ll find out for certain if this is the case when I see her on Weds. I can confirm she’s genuine and she’s emailed me the 17 page patient info.

Lucky me, I have an active lesion! I’m so happy just cos it might put “hope” back in my vocabulary!

I’ll fill you in more if it’s gonna actually happen

Sonia xx

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Oh Sonia so sorry to hear about your job. Fingers crossed though with the visit to the consultant and possible trial. Please let us know how you get on.

Cath x

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Oh Sonia you sound so happy, I hope all goes well for you. Does an active lesion mean that it is not PPMS and in fact RRMS. I have been reading the Barts Blog about PPMS and RRMS etc. From what I gather he thinks that PPMS and SPMS are essentially the same it is just that people with PPMS have just had a benign course of RRMS. The lesions that occurred during the benign phase have now entered the neurodegenerative stage. Hence the lesions seen in PPMS are old and not active. In SPMS they are old and inactive too with neurodegneration under them too. Apparently the immune system in MS does not attack the actual nerves only the myelin protective sheath. The nerve damage is secondary ie only happens because the nerves have become exposed and therefore die earlier than expected.

In my case there is neurodegeneration were radiation treatment attacked the myelin. If nerves have been exposed and start to degenerate then it tends to happen in ones 40s - ie the time when SPMS and PPMS start to happen. The same in my situation my nerves were obviously temporarily exposed in 1990 when I was 25. Then 20 years later when I was 45 neurodegeneration starts to happen.

I have recently been given statins “Simvastatin” which has been shown to slow down this age related neurodegeneration.

I can understand why you are happy - it is nice to be given the chance to fight a disease.

Take Care and keep in touch.

Moyna xxx

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So sorry about the job Sonia but I do hope you get on the trial!

Good luck, let us know how things progress.

Take care of yourself,

Nina x

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Hi Sonia

Sorry about your job, fingers crossed with the trial.

Pam x

Hugs to you Sonia

Hope is such a provocative word In hope and you hope its good news XXX Don

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