secondary progressive

[truelove47]

Is it true that time ( 25 years or more)  that ms will progress?  I am sure my neuro told me I was secondary progressive.

I am now wondering if I got mixed up;   In the beginging I was labeled RR.

There for a while I was not comming out of my relaspes and he spoke on Nal ********** can't  remember
the name of the drug.  (nalfalex?)  incorrect (SP)

Thank you
Linda

[supo_uk]

Thank you for taking time to reply.

You call the information  'anecdotal', I call the information 'patient based evidence'-same difference.

There has been a pilot trial documented in the US Natl Library of Medicine, NIH:

http://www.ncbi.nlm.nih.gov/pubmed/18728058?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum


Yes, the LDN Research Trust is raising funds for other clinical trials. They are 'already being convinced of the outcome' because the LDN Research Trust was set up by a small core of people who have Multiple Sclerosis and have taken LDN for years-and their progression has slowed or stopped.

I have personally benefitted from taking LDN, LDN has stopped the horrifying and rapid progression I was experiencing before taking it.

I still experience relapses but I they do not last as long and I return to my previous state of health, so to speak ;) that is, I do not lose abilities or worsen like I did when I relapsed before taking LDN.

LDN does not address existing damage.

Its always good to share opinions.

Kind regards,
Supo

[essdipity]

We have had lots of good discussions on LDN. Here are 2 very useful threads:

http://www.medhelp.org/posts/Multiple-Sclerosis/Low-Dose-Naltrexone-for-MS/show/453613


http://www.medhelp.org/posts/Multiple-Sclerosis/Low-Dose-Naltrexone/show/603154

ess

[essdipity]

Hi. I'm afraid I have to disagree with you about LDN. Your references are to anecdotal information, not to scientific research.

The organization is trying to raise money to conduct research trials, while already being convinced of the outcome.

I'm not opposed to LDN, and I'm glad if some people get relief from it. I only don't want people here to form unreasonable expectations. We still await evidence in this regard, and from my understanding, research to date has not borne out these claims. I believe some does exist that LDN helps with quality of life for many patients, and that usually equates to symptom relief.


ess

[supo_uk]

There is patient based evidence that LDN slows or stops progression in people with MS.


http://www.ldnresearchtrust.org/


HOWEVER, LDN is not a miracle cure. It does not work for everyone. Some patients experience slight symptom mitigation but the goal of LDN is to slow/stop progression, any symptom mitigation is a bonus.

http://www.ldnresearchtrust.org/ldn-research/129-ldn-books.asp


Hth
Supo

[truelove47]

Thank you,  It was Low Dose Naltraxone.  I could not remember.

I been on avonex 14+ years, prior to that, beta  Neuro took me off beta for really bad bruising          It seems I can't inject sub q  ( skin too sensitive ) Need the intra muscular

I still can't tell if avonex is working.  I only have faith that it is.  I still have
exaserbations          I can't remeber what normal is.

Thank you a bunch
Linda

[essdipity]

I don't know if there is hard data on what percentage of RRMS ultimately becomes SPMS (can anyone supply this?), but I do know it's a fairly high number.

However, plenty of people never get to the secondary phase. One purpose of the DMDs is to keep patients from progressing. That is shown to happen very frequently.

As to how long before a new designation may be needed, that totally depends. Each patient is different. I'm doubting it takes as long as 25 years, though.

Did your doctor mention Low Dose Naltraxone? That often makes MSers more comfortable, but there is no evidence it can prevent or slow down disease progress.

Hope this helps.

ess