Alan you are a heretic for saying that…BRAVO Various members of the scientific community have been saying that for more than 80 years,but they get trampled by the neuroligists and their friends in the drug industry.The CCSVI theory was ridiculed by the drug industry and their medical friends and is now marginalised.
Do the neurologists ever see a good outcome with anything in their field,but they refuse to let any other experts have MS to ‘play’ with…Would you call an electrician to fix a plumbing problem?
I’m definitely going to follow this up, I’ve already done a bit of research as you suggested and it really seems to fit in with my case.
I’ve never had any positive outcomes from the standard MS meds, they tend to make things worse, and even things like my constant headaches and migraines are part of Hughes and have never really been tied into my MS by docs.
I have a nurses appointment next week as my blood pressure is a bit high, I’ll arrange an appointment with my doc too.
I actually started to get a wee bit emotional there when reading about Hughes, my only fear at the moment is that I’m in Scotland and I’m not too sure a referral to London will be easy to get without concrete evidence, which you have proved is not easy to get.
I’m not getting my hopes up too much, but thank you so very much for giving me a push in this direction.
Great analogy, my career used to be in electronics and I had a theory that running an earth wire from my neck where my lesions are to the sole of my shoe might reduce electrical crosstalk. It made a bit of sense to me since the nerves are basically organic signal wires with myelin as insulation, when the insulation breaks down you get interference and disability.
It was probably a poor theory but totally poo-pooed by a consultant I was stupid enough to mention it to!
Alan of course the neurotic poo-pooed your idea.He’s chosen a speciality where no condition has a good outcome,so it doesn’t matter how complacent he is.He might have had to think for a minute about your idea if he was inclined to care.
I’ve thought that because my neuropathetic pain is misinterpretation of sensory input,if that sensory input could be ‘pre-mangled’ it would be interpretted as nothing…No pain.After eight years I cannot remember what it was like not to have pain in my feet.
I was thinking about your neuro pain, and I’m pretty sure you’ll have tried a good few things if you are in constant pain, but have you tried PEMF (pulsed electromagnetic field)?
I’ve used magnets to deal with pain over many years, even in my pre MS days, I used to play a lot of golf and used simple stick-on magnets to alleviate back pain and they allowed me to play in matches I would have had to scratch from, they really worked for me.
Since then I bought a small PEMF (pulsed electro magnetic field) machine that has also given me relief in the past, although it’s currently unused.
I’m not quite sure why it works but I imagine the magnet may be helping to align the very small electrical fields generated by the nervous system. It can be placed on or attached to any part of the body, I used to target my known lesion locations. This might just do a little of the ‘pre-mangling’ you mention.
Send me a message if you’re interested in trying my PEMF machine.
I’m a naughty boy:‘Cos there appears to be a real negative vibe against MS club members having oral steroids and my present GP is a spineless puppet for Walton Neuro (only the duty neurologist) I took a £75 gamble and ordered some Metyl Pred’ tabs from a Canadian firm.WOW…Mg for Mg they are much better than anything the NHS has begrudgingly supplied,and I’m presently enjoying the ‘bounce’ from a five day 48 mg course I took 10 days ago.I won’t touch them for 4-5 months unless there is a very special occasion in the offing…Highly unlikely.
I’ve ordered some Warfarin from the same company,enough for one a day for a month.I’ll be making up a likkle warning card to put in my wallet.I’ll be 19 months between neuro appointments when I get my 13 minutes of fame with ‘himself’ in july.He never has anything to offer ,and would love for me to dump him…Fat chance.I like hearing him say that I can’t have anything I suggest.
Please be very careful WB, as warfarin is a very dangerous drug that requires constant monitoring by professionals.
I have been on warfarin for 30 years now, and whatever meds you take can affect how the warfarin works, ie your INR level, even simple things like cranberry juice or things with vitamin k in, totally affects your level.
One of the problems when your INR is too high, is that it can cause internal bleeding, which is not always apparent immediately, whereas if it is too low it can cause a clot to form.
Please do not think I am trying to frighten you, or anyone else, just please be very careful. I use a coagucheck to determine how much warfarin I take daily.
I am not sold on the MS benefits of the 75mg dose Aspirin.
I have been taking one a day since 1998 - but this did not stop the MS Dx ten years later
Of course, it probably will not do you any harm.
Mine are as a preventative measure against further heart problems.
As my GP said: “We do know that this combination (£ other drugs + Aspirin) does cut down the chance of a re-occurrence”.
Since I am now nearly 15 years post bypass, I am inclined to trust him on this.
Thanks Pam,I understand the possibilities of problems,but I’ve been abandoned by Walton Neuro and the letter discharging me from their pain clinic is a masterpiece with 14 grammatical errors and typos.My new GP by her own admission knows very little about MS,so there has been nothing constructive done about my constant painful slip into the abyss since I was given a half lifetime dose of Mitox eight years ago.
I’m the only person who has noticed I’ll be 19 months between useless appointments.I might make the hospital administrators aware of this, just to see if it interests/concerns/bores them.Self medicating is a strange thing to be doing,but as pain and loss of movement gets further north from my feet,all useful printable suggestions gratefully accepted.
Wb
ps I have always clotted very quickly when there’s a problem.Oh,my tongue did bleed for over an hour when I bit a chunk out of it the other week.There was no bleeding following a tooth extraction after 20 minutes last week,but the fairy said it wasn’t worth anything.
Thanks folks for your concerns.The tablets are 2mg and there are on screen warnings about cranberry,etc,and I’ll be looking in every corner before I take any. As for an MS Nurse,I’ve met a couple but never had a designated one.Eighteen months ago Walton Neuro in Liverpool had two MS nurses covering from north of Lancaster to Holyhead.
There were apparently other nurse dotted around,but I think they were in Wales.In Walton Neuro all signage is in English and Welsh,just in case there is a patient from north Wales who can’t read English…That would be a disaster and Walton would have a lot of explaining to do to the Welsh Assembly.
As an aside, I’ve never had an NHS MRI scan .I paid for two private ones when being diagnosed.Walton’s view is that MRI is a diagnostic tool and of no other use.Knowing that MRI is used after diagnosis in some parts of the country,I think that Walton have grabbed so much territory and patients that they can’t possibly scan everybody after diagnosis.Synical I know,but no lies here.