LDN

[Gwennie1]

I would like to hear from anybody in the UK who is on LDN please.

How you are getting on with the drug and how you managed to get it in the first place.

[munnings]

I have been taking LDN since July 2014.  I pay fora 3 month prescription which goes to a pharmacy in Scotland.  The pharmacy then sends the  medication to me once  a month.  I'm not sure if some gps or consultants might be willing to prescribe on the NHS. I know mine won't as a fellow PD sufferer tried  and was not successful. 

I saw some improvements with bladder and swallowing problems at first but then again that could have been down to a slight change in medication.   I certainly do not feel worse and for my part I shall continue taking it as the benefits should come from long term use (allegedly !!)  I hope this helps.

[Gwennie1 in reply to munnings]

Thank you for replying. How do you initiate 3 month prescription? Do you have to live in Scotland?

GP will not prescribe without Consultants authority. Consultant will not prescribe.

How long have you had PD?

[Dap1948]

You can get it easily by phoning Clinic 158 -  0141 3577357. After filling in some forms which they email to you, a Dr McCall will phone you for a telephone consultation. You pay him £35 for the consultation and three month's prescription, which he sends to Dicksons Pharmacy. The pharmacy contact you for payment, then send you a bottle of LDN liquid and a measure.

[Gwennie1 in reply to Dap1948]

Thanks for your reply.Do you pay £35  and 3 month prescription every time, or is the consultation fee a one off, and you then pay only for the prescription.

Have you had any benefit from LDN,mow long have you been taking it, and have you had PD for a while?

[Dap1948 in reply to Gwennie1]

£35 is for consultation and prescription. After that it's just £25 for the three month prescription. The monthly LDN is about £18 payable to chemist. I started to take it then had a lot of other health problems and I was confused what was causing what, so I stopped LDN to clarify the picture. I'm doing really well at the moment (I don't know why!) so am not currently thinking of returning to LDN. My PD friend however, who has been on it for three months reports much more energy.

Hope this helps. Good luck 

[Gwennie1 in reply to Dap1948]

Thank you very much.Glad you are doing well. Long may it continue.

[jeeves19 in reply to Dap1948]

Xx

[munnings]

I was diagnosed with PD November 2011, age 57.  Like others I've spent hours trawling through the Internet in an attempt to gain as much knowledge as possible about PD and what is on offer to help with the various symptoms.  I have joined a local group for 'younger' PWP and it has proved to be a great source for exchanging information and supporting each other.  As regards LDN I'm sure a book about it was published recently but I don't recall the title.  How long ago was you diagnosed?

[Gwennie1 in reply to munnings]

My husband was diagnosed 23 years ago. Up to 3 years ago he was doing very well, but then started falling.He is fine after the initial step.How do you initiate  the 3 month prescription? Do you have to live in Scotland.? I was unaware that a book had been written regarding LDN. Local groups are great for support and information.

[munnings]

There are several books relating to LDN, the one published last year is simply called the LDN book.  I haven't as yet bought it myself but I do intend to, probably 2nd hand off of Amazon.  If you google Clinic 158 you can get the information regards purchasing LDN (you don't have to live in Scotland).  I am sorry that your husband is having falling problems.  I am much newer to this 'scene' than yourselves and appreciate that you have probably tried all manner of self help remedies.  Does it make a difference if falling is due to a balance problem or legs giving way?  

[Gwennie1 in reply to munnings]

Thanks for your reply.

The falling only happens with the initial step, due to freezing, once the first step has been taken he is fine.