Low dose naltrexone (LDN)

[Tjayoo]

Hi all,

My wife (66) has been diagnosed with CBD, which manifested itself with a series of falls which resulted in a broken arm and a broken nose. The inevitable bruises are a constant reminded that things are not going to get better (I use an arnica cream to relieve the pain and bring out the bruises).

During my research into CBD and PSP I have found that a low dose naltrexone (LDN) is known for its properties for treating degenerative neurologic diseases. I wondered if any of you have used this or indeed are using LDN to the benefit of the sufferer?

I have joined the local PSP association group near Andover, where I have found informative and encouraging carers and sufferers with a depth of understanding and past experience, which I find very assuring and now do not feel so alone, indeed the laughs we all have, are very uplifting.

I also enjoy (if that indeed is the right word) reading all your posts, Q&A, and indeed information of what is ahead of my wife and I, be assured I am most grateful to you all for sharing your private thoughts, frustrations together with your highs and lows in life.

To a CBD and PSP cure

[DenB]

Hi so sorry to hear of your wife's diagnosis. my husband who is now 59 this year , was diagnosed with CBD after a couple of years tests, 2013.

He doesn't take naltrexone but he is on Sinemet, Progablin,clonazapam and a few others.

The Sinemet was stopped for a couple of months because we weren't sure if it had any effect but my husband is back on the Sinemet because I thought I noticed a difference without it.....who knows??

How long had your wife had the symptoms before diagnosis?

I have had some brilliant advice and learnt such a lot on this site but CBD is still a bit more rare than PSP so it is always interesting to talk to other People who care for CBD sufferers.

All my very best wishes to you both

D x

[Tjayoo in reply to DenB]

Hi DenB, thanks for your reply. The first I realised something not normal, was when she was swimming in August 2013, instead of doing ususal lengths, she was swimming in circles with no strength in her left arm. Then on Xmas day 2013 she fell over a little grandson and went to hospital thinking she had broken her arm because it hurt so much, from then on her left arm became weaker, she is left handed too. The main falls started in May 2014 in France, a French neurologist did not know what the problem was but gave her 100g of Sinemet to relieve her alien arm but she had a bad reaction and stopped taking them. On returning to UK we had to wait six weeks to see a neurologist and he instantly said she had CBD... look it up on the internet!! He prescribed 12.5g Sinemet x 3 times daily, this seems to relax her fist a little.

Apart from that have heard absolutely nothing from anyone. Thankful for friends on HealthUnlocked forum and the monthly support group.

Take care

[DenB in reply to Tjayoo]

I had forgotten about the swimming!....my husband and I used to go to a gym, must have been 2009/2010 and he started not to be able to run or even walk on the treadmill....he kept falling off! We laughed about it at the time....And then when we went into the pool afterwards, he couldn't swim whilst previously he was a brilliant swimmer! His legs kept sinking and he just couldn't seem to do the strokes! We knew something wasn't right......

Take care both of you

Dxx

[Didalju]

Tjayoo, if I am reading between the lines of your post correctly, I believe we met at the PSP meeting in Andover? You were really friendly and made me very comfortable especially as it was my first meeting. Thank-you. Good to see you have decided to post on the forum!! If I have got my facts wrong then I do apologise. All the best to you and your wife and look forward to seeing you at future meetings, I can attend the one in April. Kind Regards Nicky x

[Tjayoo]

Nicky, thanks for that, nice to be appreciated! Yes, that was me, now I have started to post I may do a few more as I do more research. Take care, Tim