ive got d Biotin in capsules too
how much are you taking moyna I think I’m doing 100mg a day roughly
ive got testogel here too which I’m going to start asap as my t levels are low/normal so it should help as is neuroprotective by all accounts
Hi Kris,
I am taking 100mg 3 times a day - so 300mg in total.
I am thinking of seeing Ben Turner Privately - thanks for that tip. Any word yet on your LP results ?
Moyna xxx
Hi moyna
nothing yet no I think he said it’ll be a month
theyre all saying doesn’t look like Ms but I’m convinced, it’s the leg pains more than anything
ive got another mri tomorow of limbar and thoracic and been having big pains in thoracic spine so I think that might be where they find an issue
hows the biotin going? Does it make you need the loo more
Maybe I do need the loo more but all in all I think both my water works and bowels are better in the biotin. When I wee there is more force rather than just a slow trickle sound. This must mean the muscles are working better.
Which hospital does Ben Turner Work from. I have to travel from Belfast so might fly into Stanstead and travel to Liverpool street station. Hopefully I can see him in a hospital not far from there as I dont fancy travelling too far with my dropped foot issues.
If there is an issue in your thoracic spine that would not cause the l’hermittes - as I know for sure that is caused by cervical issues.
Moyna
Hi
he works out of a couple of the hospitals I’ll have to find out for hou
I was told the same about lhermittes if from Ms would be a cervical lesion, I have had two cervical MRIs one in Feb when the lhermittes was bad and one in April when it had settled, they’re saying both are clean?
Pardon me for butting in, but Dr Turner is my Neuro and based at the Royal London Hospital, in Whitechapel, which is only a mile or two, from Liverpool Street. I see him on the NHS and no idea about his private work.
http://www.mssociety.org.uk/near-me/localservices/royal-london-hospital
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Hi Whammel
whats he like as a neuro? He looks to be extremely good in his talks at the MS society in the usa earlier this year
He is a perfectly decent bloke, but still doesn’t have any approved treatment for PPMS, so my annual visits are utterly pointless. I never ask for anything, because I know there isn’t anything, but it keeps me in the loop.
If he does private work at Old Broad Street, it’s about 200 metres from Liverpool Street.
I know prof g and some of the other mds at Bart are suggesting a strong induction therapy or anti inflammatory early in PPMS may be of use? Not sure how long you’ve had Ppms
also read about canabis oil earlier or rso which some people claim has helped them amazingly
I have probably had PPMS for 25 years, so not exactly at the early stage. Barts might be talking about possible approaches, but talk is all it is and nothing has been trialled and ready to go.
Never had any good advice from a Neuro and everything that helps I have found myself, which has worked out pretty well and very satisfied with my choices.
Now in case you are in any doubt, I have a healthy respect for these dedicated professions and hardly their fault nothing can be done for PPMS.
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What have you tried and how do you feel it’s helped
I would say anything that improves general health must have a positive impact on MS too and in that category, I include a daily physio/exercise routine that concentrates on areas of weakness. Also, eating a healthy diet like Jelinek/Mediterranean provides your body with the right fuel and I never eat rubbish (otherwise known as treats).
An fes is the best thing I have found to help prevent dropped foot and they can actually build muscle strength over time.
Magnesium helps ease problems with spasm & cramp.
In my view ldn is a remarkable drug and soon noticed some modest improvements to balance, strength, fatigue, bladder control and ability to concentrate. Most importantly it has considerably slowed progression, which is pretty good for PPMS. The drug has been safely taken by thousands of MSers for thirty years, so although the evidence is mostly anecdotal, it is pretty overwhelming.
I must stress that this approach may not suit everyone and we all find our own path in dealing with this pesky condition.
Moyna - have you joined in with the facebook group Biotin for Progressive MS. l have asked some on there about B1 - Thiamine - as l have got some and wanted to know how much to take. Will let you know. l have received my pure powder - but still have not tried the micro scales. lt is a tiny amount of pure powder to take - not like swallowing 30 of the tablets with fillers. Although l still have so many pots - l shall work the two into together.
Hi Spacejacket, I have joined the facebook group too. It is full of interesting information.
Moyna x
I only want to see Dr Turner to see if he can tell me whether or not I have MS. The 2 neuros I have seen cant either seem to rule it out or rule it in. I want to try LDN but cant seem to get it as have no dx.
Moyna x
The thiamine B1 - l see that 500mg is the dose they are taking with the B7 Biotin. The two are supposed to work well together.
Biotin-thiamine-responsive basal ganglia disease.
Now this is another disease very similar to MS - and it responds to both the B vitamins Biotin and Thiamine- B7 and B1.
Never heard of it until recently - makes you wonder how many more there are.
Sorry for the obvious question, but have you asked e-med or one of the other providers if they can issue a prescription for ldn? You don’t need a definite diagnosis of MS and a script can be issued for all sorts of other conditions, so probably worth asking.
Hi Moyna
had the LP results now and they’re clear with no sign of oligoclonal bands
had thoracic and lumbar spine mri today too waiting on results but the radiologist showed me two bulging thoracic discs so that’s 3x cervical and 2x thoracic disc bulges now three impinging on the cord
does all this rule out Ms now?
Hi Kris, I really do think you can forget about MS especially now your LP is clear. The discs pressing on you spinal cord will produce neurological problems. They can operate on those discs I am sure. Surely all this puts you mind at rest.
Moyna xxx
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