While I am intrigued and interested in CCSVI I will still remain sceptical while it is in the trial proses, I understand these trials must be done and until we have a firm reason why we have MS they need to and always must go on.
But until then I will stick with MS being a neurological condition.
So many theories have come up about MS and what treatment is the best way to go since I have been diagnosed (5 years) They have been and gone in that time. So this is why I will remain sceptical. I will not put myself forward for stem cell or for CCSVI I will not be a guinea pig for these radical treatments when not enough is known about them. This of course is my own opinion but I do feel like I should speak out. I know some will disagree and that is how it should be, without people having different opinions we will never get to the conclusion of what causes this debilitating, life changing disease.
Much love xox
Monday 30 November 2009
Sunday 22 November 2009
DR Chris talks about LDN
Please watch this video and pass it on... Thank you!!!
http://www.youtube.com/watch?v=CVpjsDK0LPA
http://www.youtube.com/watch?v=CVpjsDK0LPA
LDN 3 days and progress!
It's been 3 days now and I wasn't expecting any changes yet... I am on the lowest dose of 1mg for this first month.
Like I said before they only thing I have noticed is vivid memorable dreams...which seem to be getting less vivid, I might add.
So I was standing in church today with my eyes closed praying and suddenly thought.... " I'm standing up un-aided!" (Usually I have to grab hold of the chair in front of me or at least peak to see if I'm level) But No. not this time! I can actually stand balanced with my eyes closed on my own! I can't tell you the last time I was able to do that since MS and before LDN!
Wow... I'm so happy!.... progress already and only 3 days on a low dose.... Please trial this! I can see the benefits for myself... we need this!
Thought I'd keep you all updated :)
Until next time
God bless
Like I said before they only thing I have noticed is vivid memorable dreams...which seem to be getting less vivid, I might add.
So I was standing in church today with my eyes closed praying and suddenly thought.... " I'm standing up un-aided!" (Usually I have to grab hold of the chair in front of me or at least peak to see if I'm level) But No. not this time! I can actually stand balanced with my eyes closed on my own! I can't tell you the last time I was able to do that since MS and before LDN!
Wow... I'm so happy!.... progress already and only 3 days on a low dose.... Please trial this! I can see the benefits for myself... we need this!
Thought I'd keep you all updated :)
Until next time
God bless
Thursday 19 November 2009
Day 1 of my LDN journey
... Or as I'm going to call it OL Operation LDN.
I took my first does (1mg for 1 month) last night before I went to bed. It is best to take LDN at night because that is when your body is replacing T-cells ( T- cells are what make you feel well! )
I was actually a bit scared before I took my dose... I don't know if this was because of all the anticipation that I had built up over the past couple of months trying to get LDN prescribed for me. I guess I have so much riding on this that I'm scared it won't work for me. Deep down I know my fears will be unfounded, even so ... I was nervous. I didn't expect that!
Like I expected I had crazy dreams, but they weren't as crazy as the dreams I had when I used 24 hour nicotine patches. Now they were crazy dreams!! I was convinced, one night that I had seen this huge bug with hundreds of legs crawl up my bedroom wall and on to my ceiling... I even got up and looked for it! So nothing like that... yet lol
According to other people's experiences, these memorable dreams only last a few weeks until my body is used to the medication... I don't know yet about whether increasing my dose will bring them back for a few weeks again... I'll have to wait and see.
I am now waiting on the recurrence of old lesions rearing their ugly head, again in other people experience this happens. But again only for a couple of weeks. SO... yeah I'm scared about that but this is a means to an end and I know it will be worth it because the chances of me getting new lesions while on LDN are few.
Anyway enough for now... Don't worry I will updating regularly on my progress.
Drug companies won't trial LDN but I will!
x
I took my first does (1mg for 1 month) last night before I went to bed. It is best to take LDN at night because that is when your body is replacing T-cells ( T- cells are what make you feel well! )
I was actually a bit scared before I took my dose... I don't know if this was because of all the anticipation that I had built up over the past couple of months trying to get LDN prescribed for me. I guess I have so much riding on this that I'm scared it won't work for me. Deep down I know my fears will be unfounded, even so ... I was nervous. I didn't expect that!
Like I expected I had crazy dreams, but they weren't as crazy as the dreams I had when I used 24 hour nicotine patches. Now they were crazy dreams!! I was convinced, one night that I had seen this huge bug with hundreds of legs crawl up my bedroom wall and on to my ceiling... I even got up and looked for it! So nothing like that... yet lol
According to other people's experiences, these memorable dreams only last a few weeks until my body is used to the medication... I don't know yet about whether increasing my dose will bring them back for a few weeks again... I'll have to wait and see.
I am now waiting on the recurrence of old lesions rearing their ugly head, again in other people experience this happens. But again only for a couple of weeks. SO... yeah I'm scared about that but this is a means to an end and I know it will be worth it because the chances of me getting new lesions while on LDN are few.
Anyway enough for now... Don't worry I will updating regularly on my progress.
Drug companies won't trial LDN but I will!
x
Friday 13 November 2009
UPDATE
Hi guys! Sorry I've not updated for a looong time!
I'm doing okay... I've had a couple MS moments through out the past few months. Ergh! L'Hermitte's is the worst. To put it in layman's terms it feels like an electric shock running down your body every time you bend your neck forward. If I could have plugged electrical items into myself then I'd have saved a fortune in utilities!
I had an update with my neurologist in October where I asked about the drug LDN (low dose naltrexone)I had heard so many good things about this, but I knew that doctors aren't readily prescribing it as it isn't a licensed on the NHS... Okay. I think I better put a link in here as it is so complicated to explain!
Here's the LDN trust's web site... have a read and see what you think... pretty impressive I think you'll agree! http://www.ldnresearchtrust.org/default.asp
So, to cut a long story short, my neauro was very supportive about me wanting to try LDN but he wasn't going to prescribe it, he did say if I could get a doctor to prescribe it then he'd be willing to monitor me.
I went a long to my own GP who hadn't even heard of it... so I gave him lots of information I had found on the net and he researched for me. He got back to me and said he thinks it's a good, positive thing and so cheap that as long as I never sued him (lol) He'd prescribe on the NHS for me!... result!!... I could have kissed him!
So....now going to get my script later today and give Dickson's pharmacy in Glasgow a call (The best and cheapest pharmacy to get your LDN from) and I'll be back keeping you all posted on how it is going for me :)
Until next time
God bless x
I'm doing okay... I've had a couple MS moments through out the past few months. Ergh! L'Hermitte's is the worst. To put it in layman's terms it feels like an electric shock running down your body every time you bend your neck forward. If I could have plugged electrical items into myself then I'd have saved a fortune in utilities!
I had an update with my neurologist in October where I asked about the drug LDN (low dose naltrexone)I had heard so many good things about this, but I knew that doctors aren't readily prescribing it as it isn't a licensed on the NHS... Okay. I think I better put a link in here as it is so complicated to explain!
Here's the LDN trust's web site... have a read and see what you think... pretty impressive I think you'll agree! http://www.ldnresearchtrust.org/default.asp
So, to cut a long story short, my neauro was very supportive about me wanting to try LDN but he wasn't going to prescribe it, he did say if I could get a doctor to prescribe it then he'd be willing to monitor me.
I went a long to my own GP who hadn't even heard of it... so I gave him lots of information I had found on the net and he researched for me. He got back to me and said he thinks it's a good, positive thing and so cheap that as long as I never sued him (lol) He'd prescribe on the NHS for me!... result!!... I could have kissed him!
So....now going to get my script later today and give Dickson's pharmacy in Glasgow a call (The best and cheapest pharmacy to get your LDN from) and I'll be back keeping you all posted on how it is going for me :)
Until next time
God bless x
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