Im thinking tec. Just s&^$ scared about side effects. Though I think everyone is thinking this is a good one. so you been relapse free for 10 years? Thanks
N
She’s my neurologist too Sarah. Nice lady 
Hi N, yeah it’s pretty terrifying isn’t it! I’m still floundering most days, but I try and put it to the back of my mind. I’ve been off copaxone for nearly a week now and the back pain is resolving (kind of) so I’m going to start back on it and see how I go. If it comes back I’ll have to stop.
Im thinking of asking about tecfidera at my next appt, I’m not keen on developing lipoatrophy! Plus I’m covered in bruises from the autoinject (not brave enough to do it manually)
have you had your official diagnosis yet? I’m not sure what’s worse, waiting for it or receiving it. I’m still very very newly diagnosed, I knew it was coming, but it was still a shock-if that makes sense?
Keep in touch about which route you choose
Sarah x
Is she! what a coincidence-yes she is, I’m really happy with her so far. She was my consultant while I was an inpatient at Salford and my care just stayed with her luckily.
Haha! Don’t worry-I know exactly where you’re coming from! She sounds EXACTLY like my nurse. I’ve only met her once so far, but I was with her for a good half hour, and I found her very dismissive.
Leaves me feeling a bit worried if I have another ‘flare up’ and it’s a bad one, that she will, yet again tell me it’s not an indication that my ms is progressing in any way because it’s just a return of previous damage.
She seems either ignorant or very misinformed. Unfortunately for me, although there is more than one ms nurse for the area, she’s the only one I will see. She isn’t a senior either I didn’t think. Although according to the Salford site, she’s done it for many years. I live in Cheshire, but the Neurology round here is next to non existent, so it’s a long trip just to come away feeling like I’ve been ignored
Hi Sarah
No not diagnosed - but technically by the results of my last scan id say so. The only not understood thing so far: My first scan showed old (3) and active lesions (2), my second scan showed two more mild and small lesions (technically MS). My second scan was enhanced (the first not) and only 10 weeks apart. I think he hasn’t dx me yet because that could be a grey area plus i dont know if i have any lesions on my spine and until i see my scans (computer was down when i went the first time) i couldn’t be sure at the minute. I feel like im hanging onto the cliff face with one last finger, one last hope.
After the second scan it was my MS nurse who called me and gave me the news, probably a good job she called, at least she couldn’t see the tears and i could continue to be manly. lol.
Yes i know exactly what you mean - its coming - but id just like to put it of for another 10 years. I am steering away from needles im beginning to realise folks don’t get on with them that well. I think because the needle is only skin deep and needs to go into the muscle. I would do it myself because i belive theres some merit is bypassing the stomach?? Thinking out loud…
Most likely use Tec just becuase its better but id start with using quarter pills or half pills and slowly build it up - Just to limit the initial side effects. As far as i understand these drugs are immune suppressive, hence why they have to be taken all the time because as soon as you stop they stop and the white blood cells recover. Injectable ones sit within the skin layer and effectively slow release hence skin reactions due to sustained contact. I am guessing here, but ive spent a while thinking about this and im sure you know how that feels.
Are you undertaking any alternative therapies? Do you exercise like jogging or cross training?
Thanks
N
Hi N, you’ve had quite the journey so far! All these ifs, buts and maybes don’t do anything to help your state of mind do they!
The computers were down when I went to get my MRI results too, so I’ve no idea if there’s been any clinical worsening in my condition yet, I haven’t had another appointment through to date and no letter either.
Live been researching a lot into tecfidera, I think I’m going to talk to my nurse about it the next time I see her, I don’t have a problem taking the copaxone, but for vanity reasons I don’t much like the thought of what it could do long term.
im not taking any alternative meds no, I’ve not really looked into that to be honest, I’m taking every vitamin under the sun, and folic acid (folate levels were low at my last blood test) and I’m trying to adjust my diet (I don’t use salt anyway so that one was easy!) I took up yoga after diagnosis, and bought a treadmill-but running really isn’t for me, I just can’t seem to get into it. But the yoga is helping to strengthen my core and hopefully the rest of my muscles too.
Have you looked into alternative therapies yourself? I’m not sure I’d know where to start
sarah
sarah
have you tried Hyper Barric Oxygen Therapy?
6 people sit in a decompression tank and breathe oxygen through a mask for an hour, 15 mins to get to the right pressure and 15 mins to come back. uninterrupted reading for 90 minutes!!
it’s available at some ms therapy centres.
carole x
Hi Carole, I like the sound of uninterrupted reading! No I haven’t, I didnt even know it was an ms therapy. Have you tried it?
Definitely something to look into, even if it just means I can read in peace for a while, lol!
Sarah x
Hi Sarah
Ill lay it all out, here goes.
2 mile jog every morning
30mins cross training every night - plus some strength training
4000iu b12, 4000iu d3, 800 folic acid, 2000mg omeag 369, 2000mg cod liver, B complex, B3, 1000mg vit C (counter intuitive, 500mg Calcium D&K - every night (weekend off) 40 mins before bed. every 3 night take an asprin also just before bed
Turmeric twice a day - Half cup of powder table spoon of black pepper, 3rd cup of water and vegetable oil - slowly heat it until it becomes like custard (dont boil it just really heat it slowly). Put in a glass jam jar let it cook abit with lid on. Only make enough for about 3 days. Then use it for tea - two heaped tea spoons of the custard and make tea with it. Half the cup of hot water stir it up for 3mins fill it up with cold water down in one - then drink shed loads of water to push it down quicker.
I drink minimum 7 pints of water a day.
I dont do any thinking anymore - i was getting in a pickle last year when this kicked off. I use ventalin on and off (not asmatic most of the year) and this helps me get some o2 down my wind pipe occasionally.
I have a length of 22mm copper pipe that i use for stretching - It helped my during my CIS and has become my friend.
Tec will be used lets do it - though to be honest i feel pretty good - Well i bloody well ought to be with the amount of stuf i shoved down my neck.
Alkaline phosphatase was raised at cis and a month later - just had that redone out of curiosity but dont know yet. all bloods are clear…
A fools hope? - is all i have at the minute though it seems as good as anyones.
Ps got some Symprove gut biotics coming get abit of that down my neck. finding space to avoid clashes is getting tricky
thanks
N