Drug free RA treatment

[Cathy777]

Just seen mention of a device similar to a pacemaker which is implanted under skin. Its 4 or 5 years away but is showing good results. Something to do with suppressing the vegus nerve but I haven't time to check it out.

[Cathy777]

That should be vagus nerve and just google vagus nerve and RA apparently.

[helixhelix]

also previous posts on here

healthunlocked.com/nras/pos...

Or use search box top right. I have my fingers crossed for this!

[Cathy777 in reply to helixhelix]

Thank you! I should have known it would have already been picked up here! I bet the drug companies won't like the sound of this! Spent 10 hours having my bio drug infused yesterday and am exhausted. Hope springs eternal!

[Leonwp]

Hi Cathy, this was initially done by a proffessor at a Dutch university hospital, i applied to go on the original trial but was just too late. I have applied to go on the list to be involved in further tests or to be an early full time user. The unit works by blocking signals at the Carotid nerve ganglion just to the left side a little below the neck. It doesnt stop RA but what it does do is when the brain sends out REACT signals because it thinks the joints are being attacked they het scrambled so nothing happens, so no swelling, no pain, no butning etc. It doesnt stop some of the other problems associated with the disease but with the reactions gone so is the need for pain relief and the need to control RA is less drastic so less meds. The results they acheived on the trials are nothing short of astounding, including in many cases full remission from symptoms and all of the patients responded to some degree. Of course what it cannot do is repair damaged joints but for new sufferers this could be truly wonderful. This is a very basic explanation of how i was told as a layman that it works, i hope that helps.

Blessings

[Cathy777 in reply to Leonwp]

Yes that is very interesting. I read an article to saying it could be available in Europe by 2017! I am going to ask my doc about this!

[Phoo2 in reply to Cathy777]

Wow could you please send link to this article?? That's amazing progress!!

[Cathy777 in reply to Phoo2]

I don't know much about this but if you look at some replies I got you will find a link and more info from those who know more.

[Cathy777 in reply to Leonwp]

Are you in Holland? Can anyone apply to be involved on future tests? Xx

[Cathy777 in reply to Leonwp]

Hi again. I see you are in UK and have fought PIP assessment! I too have just applied to the Appeals Tribunal and am actually terrified. I just cannot bear all the stress involved and the effect on my already bad depression. But I feel I have been treated unfairly and morally I have to make a stand. Its comforting to know there are others in same boat. Xxxxx

[Leonwp in reply to Cathy777]

Cathy my huge problem was with DLA, i was declined flat at every stage until court tribunal when the panel of a judge a gp and a retired senior social worker turned it round and seriously ripped at DWP, i had been waiting to get other help but without that DLA award i was stuck. I had not long before received full diagnosis and prognosis partly because even my consultant couldnt believe my blood results and how violently i was rejecting all meds after a short time so they were looking for more than RA, but apart from type 2 diabetes which ive had 14 years i was super fit until then with nothing wrong with me but in 6 weeks i was in a wheelchair. I got my DLA award on 05/11/2012, 7 days later i was moved into my purpose built flat in a care facility and have been here since. I have a life tenancy but only because of my disease so when last year i got notice saying DLA stopping in 28 days you have to apply for PIP i was terrified, however i got a home assessment, my carers were there with full rota etc, my MP sent her secrrtary as an independant observer and the fact that im in a care facility obviously helped, so i was awarded 14 points on mobility and 41 points on care. The system is awful and the first time through it nearly finished me. Unfortunately when you read the figures of the amount of fraudulent claims there were on DLA and the fact that tens of thousands never applied for PIP it was obvious that there would be a very tough backlash by the DWP who were being taken for mugs, that is no excuse for how genuine people get treated now but i think it will ease off now that a lot of the problem has been removed. That was a terrible price for the genuine claimants to pay, but i am not surprised it happened. Shortly after my PIP was granted the DWP contacted me and said no need to re apply for ESA support group again, you will stay on that with severe disability top up from now on. Then this letter summoning me to job centre and telling me my benefits will stop arrived last week, that not only affects my finances but also the place i live and my tenancy. That is why i am so furious and why for the first time i have allowed my MP to intervene. In the last 4 years i have devoted my time to finding people who need help and advice and acting as legsl advocate for them which i can do from my bed and is very rewarding. I really hope you carry on fighting and win your case, it is an awfulky hard battle but i found i reached a point where i had nothing to loose so i became a careless and fierce fighter, i was at the point of all or nothing so strangely it no longer mattered. Please dont give up, gentle hugs and best wishes on the way.

Blessings Leon.

[Cathy777 in reply to Leonwp]

Oh Leon what a lot you have been through. I am sorry. My problems are nothing in comparison. But I have always hated injustice and I feel this is unjust so need to fight it. I actually know of people who have managed to claim fraudulently just to buy a new car! They actually succeeded! It frightens me that it can happen.

Please take care and keep fighting!

[Leonwp in reply to Cathy777]

There is a lot i havnt put here but things have been difficult. But i have found and helped 2 people who have had much worse than me, in fact in one case horrific problems. I hope those fraudsters get caught, unfortunately when they do they often just walk away without any penalty.

[Hidden in reply to Leonwp]

I received two letters last week from ESA, both dated the same. Each letter told me something completely different.

One said I would be staying in support group, the other told me I would be transferred to the work related activity group. I nearly went into melt down! I've already had my PIP reduced by half.

I rang ESA and was told to ignore the work related letter. Why send it? The anxiety that caused.

I was horrified by the untruths, and contradictions that were written in my PIP report. It had absolutely no basis on fact. I didn't have the energy to fight this, I would have gone into a roaring battle over the ESA though!

[Leonwp in reply to Hidden]

I am sorry this has happened to you.They have no idea of the agony thet cause, at the nd of the day they go home and you are left in pieces not eating not sleeping and then just get a dismissal waved at you. It is awful.

Blessings.

[Eiram50 in reply to Hidden]

Wow. It seems to me that the system outwith Scotland appears so much more complex, challenging and unforgiving. I would never consider my condition as serious or as debilitating as some I e seen but I had no problems whatsoever when applying for and being assessed for PIP. I have the high rate for both mobility and care.

Maybe I've just been extremely lucky, i don't know but it just seems that outwith Scotland it seems much less fair and way less accessible?

Marie

[Eiram50 in reply to Leonwp]

Sounds like a miracle.

Is there any potential complications, riteriNthat need be met etc?

Marie

[Leonwp in reply to Eiram50]

There were none noted from what i remember apart from coming off the meds which can be difficult but no there should be nothing from a small electrical charge that would cause problems. I dont know how long it would take me to get off morphine now. When pharmy forgot to get my script from the doctors on a friday i went through to monday with no morphine and i was in a terrible state with the increasing pain and chemical withdrawal, but for me that is a small price to pay to get off my 218 doses a week of poison.

[Eiram50 in reply to Leonwp]

Wow, I bet! Well it certainly seems like the answer to our prayers. I hope that you're able to access it when the time comes.

[Simba1992]

It's about stimulating the vagus nerve. The new noninvasive treatment where no implant needed. It already exists in Europe. Have tried to find a clinic that gives this therapy.

[Phoo2 in reply to Simba1992]

Can you give more details about the non invasive treatment please 😀

[mary4444]

that device u was talking about was on a doctors program on television there was a lady who had it done and reckoned it was marvellous that was the good news cathy the bad news really exspensive and works the same way as a pacemaker my mother had pacemaker and it worked on a battery that lasted 10 years then they change it wouldnt it be great to have one and no more meds wishfull thinking mary xx

[Cathy777 in reply to mary4444]

Yes I thought there must be a downside! Not sure if it would be more expensive than the apparently very costly biological drug I am on. Oh well its early days. Thank you!