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You may well be right - they had been absolutely fine. It's my neck glands that are up all the time as of the last month or so. I had kinda hoped maybe it was herx' but I don't think so. Oh, because GP will be more amiable to do blood tests (which will show zilch as always, so not sure why I want hi...

Hiya, still alive, I think. Been a very rough time since I last posted, seem to be getting worse and worse. Am now extremely weak and lost more power in the last six months than I did in 15 years, which has really hit me hard mentally as well as physically. I don't know why this is, nothing seems to...

Hi, yep you're right. To be honest I didn't know that there may be conflict between the two? (unless you mean the immunosuppression risk, but I would hope i'm ok as the last time I tried steroids was probably 5 yrs ago) My neuro is very blasé about the JC virus, I have a feeling he thinks that being...

Hi Lyndacarol, and thanks. To be honest the cholestyramine has always been a bit of a concern because before I started it I read the indications and noted that it can hamper absorption of the fat soluble vits, A, D, E, K and other drugs, especially penicillin and tetracyclines - so i'm careful to ta...

I know that I likely won't go on it, it's a deja vu scenario. I've been here with him before and turned it down, he seems to like Aubagio for some reason. Sickness, dizziness, confusion etc. sounds like my average day, I don't want it doubled up and I most definitely don't want the hair loss or live...

I spoke to Biogen help re: Avonex and the lady said migraines are listed but there's no suggestion of what to do with regards them. However it is suggested if people have trouble with the flu symptoms, to titrate up. I thought, of course, good point! So I suggested it to one of the many MS nurses, b...

Too right, still be there nattering two weeks later! Haven't heard back from neuro or nurse (love feeling so well supported), so phoning Avonex first thing Monday and if nobody can give me any advice re: these insane headaches then it's definitely done with. Undeniably feel disappointed and/or a bit...

Thanks Scott - Ohh yes, sorry I forgot to to update on that. Well, I saw the ENT guy a few times, he scoped, did a scan etc, all fine couldn't see anything, he surmised that my problem was reflux at night but that I just didn't know it. Assumedly meaning GERD. So he put me on Omeprazole and copious ...

I bit the bullet and did week 4 Avonex last night, by 6am seriously wished I hadn't. Rolling around crying in agony with all encompassing head/eye pain again has forced me to say enough is enough. I'm by no means a headache wuss and quite used to bad migraines, but it really is on another level for ...

I take painkillers and anti-inflammatories all the time now. A little paracetamol or brufen isn't going to touch much of the injection reaction, but tbh I don't care so much about that. That's one day. What ensues for the rest of the week is my big problem because I can't function/see/think/sleep/wa...

Hi, update again... Week 2 of Avonex was better, side effects the usual but legs didn't disappear. Walked a bit more. Week 3 I screwed up the auto-inject, didn't get all of it, but had strong reaction as usual so know I got most. I thought, well maybe it'll go a bit easier on me, but no, woke up the...

Ok i'm with you, thanks for the clarification (I never quite understand the scientific version, always need the layman one). I'm not sure what to make of said indiscriminate activation, considering it's generally accepted that our immune systems wildly mis-fire? I'm trying to, it's not the first tim...

Hi, thank you for all the advice, very much appreciated. I'll have to go point by point for my brain to follow... NHE - Hi, yes, 2 brufen every few hours and paracetamol for the chills etc, but they don't touch it. I remember it being that way before. The only thing that began to shift that monster ...

Update - "Ahh Avones, I have not missed you." Onward from the previous, 'out and about more' hurrah type update. It all went wrong. I had a stressful week getting an assignment in, got through that fine, then started to feel awful. Could have been the stress and late nights or could have b...

Hope a good Christmas was had by all :) Quick update: Had quite a good Xmas, currently managing 500mg Valtrex without continued breathing/tachy trouble (hurrah!) and genuinely feel that I have slightly improved energy from a month ago. I've certainly been doing more most days. Those close to me have...