I put a link in the everyday forum from Barts MS Blog on this as I thought it looks interesting. Didnt get much interest though.
I hope that you are all doing well.
Moyna xxx
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Hello Monya, I assume this is the link:
http://multiple-sclerosis-research.blogspot.com/2015/03/biotin-for-progressive-ms.html
I should think it will get more readings here. Personally, any sign of someone doing something for PPMS is worth sharing.
Best wishes, Steve x
Hi Moyna
Did see you had posted this on Every… - thank you on PPMSrs behalf. I get the Barts blog too so was chuffed to read something almost positive. Biotin ordered from Amazon and I expect to rattle with all tablets needed whilst hopefully still moving!
Yes, this is very interesting indeed. And Barts themselves seem to be about to announce something for progressive MS. Keep going folks - we may get a following wind at last!
Here’s some more information on MedDay’s trial of their highly concentrated biotin drug (MD1003):
http://www.pharmiweb.com/pressreleases/pressrel.asp?ROW_ID=109110#.VPcxeNLF_kU
l have done the same- l think Amazon will be selling out of Biotin. l did reply to someone with ON - as it is supposed to help with eyes.
l thought your post on Biotin very interesting Moyna. And have mentioned it on here. Also, ordered some - shall not be taking the amount recommended in the trial - but shall certainly be rattling.
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Thanks everyone. Yes I thought it looked good too, As you all probably know I dont have an MS dx but to be honest having read on the Barts Blog about BOPMS (Bout onset progressive MS) I think I have that. It is when you have a CIS then recover only to have neurodegeneration at the area that was attacked during the CIS. Typical MS cannot be DX as LPs have all been negative and that there is only one dodgy site (ie not multiple).
Anyway I agree with Lapwing in that there is something exciting going to be announced very soon to help with progressive MS. Barts experts have indicated this on their site.
I have purchased the Biotin from Amazon too. To take the trial dose I worked out that you would need to take 30 of the high dose 100,000mcg per day. This is essentially one months dose in one day, As spacejacket says I might not take the full dose yet.
I am excited as improvements have been seen in those trials and not just slower progression.
Take Care
Moyna x
I’m not taking biotin yet. I have contacted my neurologist about it - I have read in some places on the net that biotin may stimulate the immune system, so I’m waiting for MedDay’s announcement on their results and for my neurologist’s opinion.
You are probably wise. I feel that I am alone on my journey as was discharged from NHS over a year ago with no concrete dx and and awful foot drop!
Dont however feel my immune system is faulty as LP is clear and am pretty healthy other that foot drop.
Moyna xxx
Do you use one of these “foot-up” things for your foot drop? I did get a tub of low dose biotin, thinking that a little may do no harm and it may be better than nothing - but I decided to wait. May take the whole lot at once depending on what emerges in the next weeks!
Best wishes
Yes I have tried several foot-up things. A carbon fibre AFO, a SAFO, foot-up but the best so far I got from the States is the elevate Foot drop brace. I am going next for FES although I may have to pay for it as funding is only available for people with stroke or MS in my area.
Moyna xxx
Moyna,
Have started taking the Biotin - it says one a day. But l know the research was a much higher dose. So l am taking 3 - 10,000mcg. l read that you cannot overdose as the kidneys just flush out what you do not absorb. l am now in my 33rd year of PPMS - so what have l got to lose.
So its just one more supplement. Vitd3/B12/omega3/magnesium/D-Phenylalaline - and Pro-biotics. Plus what l take in hopes it will help my arthritis.
l spend more time everyday sorting out my capsules than l do planning dinner!!!
So here l am rattling away!!
I’ve started taking it today too - like you nothing to lose. As it can’t be stored in the body for long so reserves aren’t built up I am going to try the 442 daily approach - 4 in the morning 4 at lunch and a couple for tea. Let the rattling begin!
Higgs - Are you trying to out do me - Well let the fight begin - l too will try the 442 - As it is supposed to also be good for dry scaly skin - nails - and hair. l just hope that the new improved hair will not be growing on my face.
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Hi Folks,
I started mine today too. I reckon if they are on phase 3 of the trial then something is looking positive. I am going the whole hog and taking the dose on the trial. I have the 10,000mcg tablets and am going to take 10 at breakfast, 10 at lunch and 10 with dinner.
As you know I don’t have an MS diagnosis (although I think I do have it) but what I do have is neurodegeneration in a small area of my cervical spinal cord. Neuro degeneration happens when there has been in the past some inflammation in the CNS and nerves have been exposed. Essentially due to this exposure they die before their time. I did have inflammation in my cord as a result of radiation treatment in 1990. I was also unwell with a MS like attack in 2008 and was told it was a CIS. I did get better but foot drop slowly began to show itself in 2010. I don’t really fit into any category RRMS, PPMS or SPMS due to clinical history and negative LP.
My regime is ridiculous but I feel very well on it
B12 injection once per week (on prescription)
krill oil 1000mg daily
vitamin E 750mg daily
​Forever Freedom Aloe Vera gel 15ml daily (cured my knees from being sore)
turmeric 350mg daily
Vitamin D and calcium lozengers (on prescription)
​The following are strong antioxidants. As I believe it is the free radicals that cause neurodegeneration under areas of past inflammation of the nervous system regardless of the initial cause being MS or something else
maxgxl (a glutathione accelerator) daily
Scoop of denatured whey protein
Astaxanthin 325mg daily
ubiquinol 100mg ( a better form of coq10) daily
resveratrol 50mg daily
​organic matcha green tea daily in the afternoon as it really stops me from needing an afternoon nap.
Sizzleing minerals - these help you make better use of the vitamins (I am told anyway).
Doctor has also put me on Simvaststin which is neuroprotective and I also take baclofen.
I also do yoga 3 times a week, weight training and rowing twice and week. I also cycle with my dog running beside me 5 times per week. I also have a little FES device which I use to strengthen my pelvic floor and thankfully this has solved my bladder and bowel probems. I use it 2/3 times per week.
Whatever I have I have been stable with no change for abount 18 months. I have been discharged from NHS neuro who thought I might have progressive MS. As a result I have signed up to Private neuro who thinks my problems stem from the radiation I had in 1990.
These supplements are expensive. But I get ÂŁ1000 for christmas from my parents and that is what I spend it on. My sister spends hers on expensive shoes, handbags and clothes!
Moyna xxx
Moyna - how long have you been taking the Statins. My husband was on them for a while - and l read so much about them causing muscle problems. ln the end his GP did stop them as he was in a lot of pain and weakness in his legs. He has diabetes - and the statins caused neuro-myopathy.
Hi Spacejacket,
I have only been on them for 4 weeks. The high dose of 80mg. I have no muscle pain. I read on the internet “Dr Mercola” that if you are on statins that you should take ubquinol (more easily absorbed form of coq10) and this stops muscle pain. I told my Mum this and she was having muscle pain on statins and it has resolved now that she has started to take ubquinol.
Spacejacket, I enjoy your posts and find them uplifting. You remind me of a strong woman who is not going to let PPMS beat her. I have followed your advice re the SAFO and the clarkes shoes and have benefitted from them greatly. My next mission is to get LDN.
Take Care
Moyna xxx
Hi Moyna,
Is there a link you could post to the news on the Barts site? I can’t find anything about it, I’m probably looking in the wrong place.
Thanks
Jo x