I think what you refer to is exactly why people with MS are so upset about CCSVI being denied to them. CCSVI is a diagnosable and treatable condition, now that treatment is not totally risk free and has currently one big downside in that it need to be repeated every now and then.
However we are talking about a publically funded service saying they listen to patients, - no decision without me and all that PR - totally ignoring patients, and denying treatment just because they have a diagnosis of MS.
LDN is still being denied to some on the NHS as well under the post code lottery.
Yes it seems very unfair. CCSVI, LDN and also fampridine all benefit some people with MS and none are provided on the NHS. My neuro thinks that fampridine would help my walking but I would have to pay Ā£5000 a year to get it from Scotland! My neuro says that there is no money to do the clinical trials on LDN and CCSVI.
Sorry to be a party pooper but I object that very scarce NHS money is spent on anecdotal treatments.
Yes we are all aware why LDN is not being researched. CCSVI may prove to have a place in treating MS but it is very expensive so letās have proof.
Whilst it is legal for anybody in the world to get primary care in the NHS (GPs) and Ā£40 Million is owed by people from other Countries using secondary care (hospitals) the NHS cannot afford un-proven treatment.
I pay for my life saving treatment; all right itās only Ā£50 for 3 years supply but I do not ask for NHS scarce funds.
Fair enough. I do agree that funds are scarce. I am currently on nothing apart from baclofen which I plan to stop as I dont think it is doing any good. I just wish I could get a little more from the NHS so that I can return to work and pay more taxes to help the NHS.
Dear Moyna,I think that not having a diagnosis of MS could serve you well with regards to getting treatment.The politics of CCSVI treatment is mixed up with the drug companies ,and their actions in the USA a couple of years ago.Heaven forbid they lose money 'cos people improve without them making money.
Globally Fat Farma makes Ā£6-7 billion annually through MS.They donāt want us getting better.They like a āFat Bottom Lineā, with āNo Headlineā
I had an MR Venogram performed in Frankfurt two and a half years ago which shows a big stenosis in the right jugular vein and problems in the left.I could walk a bit then,etc blah blah,but now Iām in lots more pain,can just about transfer from thing to thing or unfortunate lady,given the chance, and need Ā£8000 to get to Poland for Liberation with stenting.,or Ā£10,000 if I take some unfortunate with me.
Iāve never had an NHS MRI and stopped taking Copaxone three years ago,'cos after 12 months it was making no difference.Thatās Ā£15K Iāve saved them,but are THEY going to give me a rebate? āAre they sāteā.I should have kept taking delivery and given it to any poor soul who couldnāt get it.Iām a very cheap date for the NHS, and they havenāt even sent me a āDear Johnā letter.
The MS Society recieve donations from Fat Farma and go along with the Government policies of the time.LDN and Sativex are mixed up with the same type of politics. I have it in writing from one of the worlds leading Pain Specialists that the drugs trial which is usually cited for the reason not to allow Sativex is flawed.Sativex was developed in the UK,then sold to Bayer,who charge ridiculous amounts for it.
Enough already. The sun is shining and itās my birfday,and Iām off out on āBig Bugā.
Yes I am waiting to have the doppler to see if radiation has caused CCSVI. If so then I have been advised to have the procedure done. Apparently a number of long term survivors of hodgkins disease are showing stenosis in veins and arteries in the area were thay had radiation treatment mostly in the heart area.