Hi I am new and have a question on LDN

[Gerdy]

Hello all , I am Gerdy from Holland. Been ill for a while first got the diagnose of ME, then Parkinson's finally got the diagnose of MSA. Good to read all your positive Posts, frightening as well because I recognize the rapid decline.. Anyone on parkinsonmedication or heard of LDN? I've heard LDN can relieve certain symptoms?

[Marie_14]

Welcome Gerdy. Sorry you need to be here however. Have never heard if LDN. My husband was told he had PSP with signs of MSA and 12 months later was told it was MSA. So diagnosing what is wrong seems to be a real problem. Almost everyone seems to be told they have Parkinson's first and then get a different diagnosis. In my husband's case it was obvious it wasn't that. Hence the PSP with signs of MSA, and then MSA twelve months later. Can you tell me what LDN is as perhaps it's called something else here?

Marie

[Gerdy in reply to Marie_14]

Hi Marie,

Thank you for welcoming me. I am sorry to hear your husband is diagnosed with MSA! LDN is short for Low Dose Naltrexon and is also used by MS and Parkinson patiënts. If you Google LDN you will get a lot of explanations about what it can do. Is your husband on any medication?

Gerdy

[Marie_14 in reply to Gerdy]

Gerdy sadly my husband died in February. However I like to try and help others who end up facing all the hurdles there are along the journey.

Have never heard of LDN but perhaps it was too late for my husband. He was only finally told he had MSA last December and then it was confirmed by another Neurologist in January. It's not always that late and in truth there were things wrong before then. He also had Leukaemia and doctors just dismissed it as one of the symptoms of that. At least you look great and are on the right track?

Exercise is something which was never advised for my husband and I always felt it was not right. I still think that so if you can get some exercise that is something I would advise

Marie x

[Rankin63 in reply to Marie_14]

Gerry,

I have also been diagnosed with MSA and have never heard of LDN. I will mention it to my neurologist in August when I have an appointment. Re'what Marie was saying- My physiotherapist gave me exercises to do at home after a series of classes doing similar exercises to strengthen my core.They seem to be good and I am willing to do anything that might help.

[Gerdy in reply to Rankin63]

Thank you Rankin! I am going to start with physiotherapy soon..I also want to do anything that might help. Are you on any medication at the moment?

Gerdy

[Rankin63 in reply to Gerdy]

I am on medication for side issues but not for MSA specifically. My other issues are constipation jumpy legs and indigestion. I have been told there is no medication for MSA which is a nuisance. Hope this helps.

Mina x.

[Gerdy in reply to Marie_14]

Dear Marie,I am sorry to hear your husband passed away! How sad.. I wish you a lot of strengh.. I'am going to start with Fysiotherapy soon.

Gerdy

[Marie_14 in reply to Gerdy]

Gerdy good luck to you and you are right to do physio. I have a feeling that some people take Vitamin B16 too. Yanno is the expert on what to do.

Take care of yourself.

Marie x

[Marie_14 in reply to Marie_14]

Gerdy just realised it is vitamin B12! Don't want you to poison yourself! Feeling tired today and not thinking properly.

Marie x

[Gerdy in reply to Marie_14]

Hi Marie, my Gp is starting me on vit B 12 injections twice a week. I don't think there is a vit B 16, so no worry about the poisoning. Rest up and take it easy!!

X Gerdy

[Marie_14 in reply to Gerdy]

Gerdy, It seems like you have a good doctor! There probably is no B16! 😀. So B12 it is then. Fingers crossed that it will give you a boost.

Take good care of yourself.

Marie x

[Diane831]

Hi. I have no experience of LDN but if you search through the posts then Yanno's wife Jax is on it and he speaks of it in some posts. I am sure that he will pick up on your post at some time but in the mean time you might learn something from his posts.

Best wishes, Diane

[Gerdy in reply to Diane831]

Thank you Diane, I'll Search through the posts to find Yanno's on LDN

Gerdy

[Yanno]

Hello Gerdy. Jackie and I have very fond memories of our honeymoon in Holland almost 25 years ago. Welcome to our community, hopefully you will find it friendly and supportive.

Have you joined the MSA Trust; whilst primarily based in the UK, it does have some very useful information on MSA that you can download.

Jax, my wife, is on Parkinson's medication to help with some of the symptoms of the condition. We understand from our neurologist that not everyone benefits from the medication but it does appear to help Jackie.

LDN is another story!! A close friend of ours has a neighbour who took LDN and found it to be very beneficial for Parkinson's and so recommended it to us. I have had a tortuous time trying to gain any information about LDN as a treatment for MSA. I placed a number of posts on the LDN community of HealthUnlocked asking for help. Sadly I think that community is more of a promotion platform for LDN rather than a true community such as ours. In the end I received two comments from the LDN Trust that are worth repeating:-

"There is no information about Multiple System Atrophy and LDN in our files, nor do we have any testimonials from patients with this issue. A quick look-up of MSA says it's a neurodegenerative disorder, not an auto-immune or inflammatory issue, so LDN would be an experiment for you and your doctor. LDN is relatively benign, so if your medical team agrees to try it, it might be a good idea."

"I did ask our Radio Show interviewee (Dr. Jill Cottel) your question today. She said her patients with neurodegenerative diseases took much, much longer to see beneficial results. As long as one full year. Out of several hundred patients on LDN in her practice, she is only treating a few patients with these issues." The full exchange of posts is still on the LDN community.

Our own neurologist has been helpful. He has a patient with MS (note MS not MSA) where it has been beneficial and another patient where it has not. His view is 'you may have nothing to gain but you have nothing to lose'.

Now the BUT....there are side effects as you will read on the LDN trust web site. Jax had quite severe headaches when she first started taking LDN. More recently she has suffered from nausea which may be unrelated but we have reduced the dose for the time being.

In summary therefore, LDN has given no discernible benefit in the short term but Jax thinks she will try to continue for the longer term to judge one way or another if it is beneficial. Of course the real issue with a degenerative condition like MSA is know if it has helped or not - would the decline have been slower if LDN had not been taken etc etc.

I hope this helps, feel free to reply if you have any questions.

Take care, Ian

[Gerdy in reply to Yanno]

Dear Ian, thank you for your info about the LDN, I realise when reading this all back I never gave you a reply!! I went to see my neurologist just recently and she never heard of it! How is your wife Jax doing on de LDN in the meantime? Headaches gone? Is she still able to do any exercises? My fysio and I am trying and at the time I am doing the excercises I seem allright but hours later it seems to backfire on me! Good to hear you had a lovely honeymoon in Holland 25 years ago!

Love from Gerdy

[Yanno in reply to Gerdy]

Hello Gerdy

Sorry not to respond earlier - I must try and find out how to be notified when someone replies to post on Unlocked!

As you will know MSA is a roller coaster journey and it is difficult to know what 'action' is causing what 'effect'. This makes it very difficult to judge something like LDN and if it doing any good or not.

Jackie has continued to take it but on a relatively low dose - 1ml per day in the evening, taken with water through her PEG. Has it had an effect...I really don't know. We are 'wine glass half full' people and continue to do as much as we can when we can. We still have our days when we share a tear or two but being miserable doesn't make the bad things go away. The reason I say all this is that we have a good life; albeit a very difficult one. If LDN plays even a very small part in that - even if just psychologically, we will stick with it.

We continue to despair with the LDN community. we really don't know why more consistent evidence collection isn't made to answer some of these questions we all have.

Have you tried it as yet, if so how's it going? I would really like to hear your views.

Take care, Ian

[Gerdy in reply to Yanno]

Hello Ian,

Thank you for your reply!!

I 've asked my neurologist about the LDN and she went blank.. never heard of it.. I am still om madopar but the effect is wearing of gradually..

I thinking of going for a second opinion in an Academic hospital in Nijmegen, not that I am doubting my diagnosis of MSA but they are specialised in Parkinson(ismen).

Good to hear you're trying to live by the half glass full rule, but I find it not easy. I wish you and your wife all the best!!

Love Gerdy

[JanetGarrettN in reply to Yanno]

Yanno thank you for your reply an explanation. I'm here to support my 74 year old mother he was beginning her fourth year of MSA though misdiagnosed with Parkinson in the beginning. Technically Her diagnosis now as MSA with Parkinsonianisms. None of the medications seem to bring her much relief. I feel like she's progressing fairly quickly. I would like to learn more about the LDN. Any possibility is Hope.

Janet, Barbara's mom

[Yanno in reply to JanetGarrettN]

Hello Janet (and Barbara),

We would one hundred percent agree that you have to have hope and following “possibilities” is worthwhile providing that doesn’t become the main focus. We try to always be as positive as possible - this we think is good treatment in itself.

As far LDN is concerned - the Jury is still out - we remain sceptical about the constant ‘good news’ stories emanating from the LDN Trust. It’s a shame they can’t get their act together and come up with some trustworthy evidence that LDN works with MSA or not. I think a good sign of an honest broker is saying when things don’t work as well as constantly pushing the ‘miracle side’ of things.

Meanwhile Jackie continues to take it at night through the PEG - just over 1ml which is a low dose. We think that we have invested so much effort over the months that we should continue with LDN even if to try and get some evidence one way of the other for others in the future.

Feel free to reply Janet if you have questions or send a direct message.

Because you are here, I assume you have made contact with the MSA Trust - they have a wealth of information and their specialist nurses are just superb for advice.

Good luck with whatever you try,

Take care, Ian

[JanetGarrettN in reply to Yanno]

Good morning Yanno,

Thank you for your reply. I hope you're having a good Sunday. I am in the states so I am not familiar with the MSA trust part? My mom's experiences that she does not seem to respond well to most medications. That's how we originally got from the Parkinsons to MSA re-diagnosis.

I have shared the LDN for her next doctor's appointment. It is apparently harder to get a hold off here in the states then it is there in the UK. I hope it will turn out to be something that would be beneficial for Jackie and others. Take good care, Ian.

Janet

[Droflet]

Low dose naltrexone has a following of enthusiasts who make a lot of claims for it for all sorts of diseases as if it were a universal wonder drug. The following article in Wikipedia gives a much more measured account: en.wikipedia.org/wiki/Low-d...

The main message is that it is active in the central nervous system blocking opioid receptors but that research is needed to determine what it might do for different diseases and their symptoms. I have not found any reference to its effect on MSA.

Droflet

[JanetGarrettN]

Hi Gerdy,

Though your original post was about a year ago, and I was here 5 months ago as a support to my mom who has been read diagnosed for Parkinson's with MSA with Parkinsonisms and is now entering her fourth year. I would like to ask how you were doing?

Janet

[Yanno in reply to JanetGarrettN]

Hello Janet...and how are you doing as well? Ian

[JanetGarrettN in reply to Yanno]

Hi Ian,

honestly not so well. I have been besieged by the worst case of vertigo, tinnitus, sinus infection of my life two weeks plus so far. the normal medications of meclizine and Zofran are not touching the symptoms of spinning nausea and more. Actually in the middle of job applications unable to drive it's not a good thing. As for my mom, Barbara, she had total knee replacement surgery 4 weeks ago today after 17 months of trying to get there encountering problems. The MSA I believe is really hampering her recovery in many ways. I saw talk of exercises to build your core on the forum and I can only really encourage that to anyone, Gerdy and others. That is probably one of the biggest problems and challenges of her recovery because she failed the physical therapy test for strength prior to the surgery. How is your wife, Jackie, doing? I haven't even been online most of this time scrolling my phone only makes things worse so I'm slow responding at present. Take care.

Janet

[Yanno in reply to JanetGarrettN]

We are coping okay thanks Janet. We are still trying to do as much as we can and accept that isn't what we would ideally be wanting to do at this time.

I am surprised that they gave the knee op to your mum as I know from friends that the physio after the operation is all important - one has to work hard at it I'm told. Jackie does some exercises for her core strength but her legs are getting weaker as she is unable to walk due to the complete lack of balance.

I am so sorry that you are struggling as well; it must be so hard to try and give the care you want for your mum whilst feeling lousy yourself. My thoughts are with you both. All best, Ian

[JanetGarrettN in reply to Yanno]

Thank you. Her knees are both bone-on-bone and she was in such agony from pain. My biggest fear was that she wouldn't be able to get out of the chair. She's pushing through but it is exhausting and very difficult causing more swings with her high and low blood pressure and difficulty breathing. I wish you both all the best.

Janet

[Mermaidia11]

Yes I take it and it does help a lot