Re: New Neuro says I'll end up in wheelchair......but I believe in LDN! What to do.

[Guest guest]

It's a very personal decision, but I would be *very* concerned about the fact that you are obviously still progressing with LDN. An MRI is helpful, but lesion load does not correlate with disability--there is damage done by MS to the CNS such as grey matter atrophy of the brain that you will not read about in your MRI report. If you have just been diagnosed in 2008 and are getting worse while on LDN, I think you really need to consider your options. That does not mean leaving off LDN because it is obviously helping you. While people have a lot of miraculous success stories with LDN I think it's reasonable to assume that like many drugs, there will be a lot of strong responders, but also a number of weak responders or even non-responders.

While the CRAB drugs are not that great as far as lowering relapse rate, they are certainly better than nothing, and Copaxone is not contraindicated while on LDN. For many people the side effects are negligible.

As far as your question about statistics, that is one of the big problems with LDN. A lot of us are taking it on the basis that there are a number of clinicians who have excellent results with many patients over many years. There isn't a whole lot of info published by way of medical research. Because of that we are all, to a certain degree, " guinea pigs " while taking LDN. Unless a large number of people with MS are observed systematically over many years, we won't really know the details of how well LDN works overall.

Also look into the posts about stopping dairy and gluten as this may cause the LDN to work less effectively (again, no " proof " on this, just the experience of a few doctors). Disease progression that goes so quickly that you notice significant increase in weakness in only a year is pretty disturbing, especially if it is continuous and not occurring as part of defined relapses (i.e. could it be possible that you are progressive relapsing or primary progressive?).

On Mon, Jan 25, 2010 at 10:18 AM, taggie46 <Taggie46@...> wrote:

 

I had an appt. last week with my new neuro. He is in the same group of neuro's I've been with since dx'd with RRMS in May 2008. He previously worked for one of the top hospitals in the US, and his business card reads: neurologist/neuroimmunology/clinical research.

He asked me which of the CRAB drugs I was taking. I told him I take LDN & had he heard of it. He said he knew all about LDN and it does nothing for MS! I told him LDN has alleviated about 8-10 of my symptoms and that I feel great....except that my balance & walking is becoming worse. I can walk around the house & yard unassisted, but need a cane for VERY short distances, an electric cart in larger stores like Walmart, but to even think of going to the mall I need to be pushed in a wheelchair.

I told him I've been on LDN since Nov. 2008 and having great results....except my legs & balance are getting worse. He said (very firmly) that LDN may very well help my MS symptoms, but it will NOT stop or slow down progression of the disease, and wants me to talk to the MS nurse about starting on Avonex or Copaxone right away. If I don't, he as much guaranteed I will end up in a wheelchair!

As for all the symptoms LDN has alleviated, he said he can give me other meds for those, then asked if I was depressed. I said not at all, but I do get fatigued, and can easily spend 12 hours or more in bed after cleaning my house, doing laundry, or just having a busy day, and he prescribed me Nuvigil. I asked what that was for. He said to give me more energy. How many more new meds will I have to take for my symptoms if I go off the LDN!!

I talked with the MS nurse & told her I believe in LDN, but do not want to end up in a wheelchair. I also asked her, " can't people on the CRAB drugs still end up in a wheelchair? She said, yes, they can. She then said, since the Dr. did not order an MRI, she is going to suggest that he orders one right away. That will tell us whether there has been any progression of the disease in my brain or spine since 2008. If no progression, then the LDN must be working!! I liked her idea!!

The reason for my email is.......are there any statistics as to how many MS patients are or had been in a wheelchair with or without using LDN? Any help regarding my decision to remain on LDN or start on injections, either way, would be greatly appreciated.

[Guest guest]

I have Primary Progressive Multiple Sclerosis and have been taking LDN for 6 months. So far, the progression of my disease has not been slowed or halted. I am going to continue taking it though because I've been told that it is a long-term treatment and could still work for me.When I was diagnosed in 2006 with probable RRMS, I started Rebif. After 2 years, when it became obvious that the Rebif was not working, I switched to Copaxone. When the Copaxone didn't work and I was diagnosed with PPMS, I stopped it too. CRAB drugs did nothing to slow or halt my progression. I can still get around my apartment with difficulty, but need a wheelchair when I go out.If you feel more comfortable with traditional medicine, you can take LDN and Copaxone at the same time.By the way, when I was diagnosed in 2006, I was told that annual MRI's are required to track the progress of the disease. How would your neurologist know if the LDN is or isn't working without supporting MRI's? Your neurologist is narrow minded and is probably receiving money or perks from pharmaceutical companies to prescribe their drugs. I have changed neurologists many times because I felt the neurologist was not helping me, had limited knowledge, was narrow minded, or was flippant and did not take my fears and concerns seriously. In my experience, neurologists (or any specialist) fail to see the big picture and are reluctant to accept any theory or treatment out of their personal comfort zone of "established" or "traditional" medicine. You are your own advocate and must follow your instincts. In any case, if Dr. Paolo

Zamboni's theory of CCSVI is correct, nothing but surgery will halt the progression of MS. Carolyn From: taggie46 <Taggie46@...>low dose naltrexone Sent: Mon, January 25, 2010 9:18:40 AMSubject: [low dose naltrexone] New Neuro says I'll end up in wheelchair......but I believe in LDN! What to do.

I had an appt. last week with my new neuro. He is in the same group of neuro's I've been with since dx'd with RRMS in May 2008. He previously worked for one of the top hospitals in the US, and his business card reads: neurologist/ neuroimmunology/ clinical research.

He asked me which of the CRAB drugs I was taking. I told him I take LDN & had he heard of it. He said he knew all about LDN and it does nothing for MS! I told him LDN has alleviated about 8-10 of my symptoms and that I feel great....except that my balance & walking is becoming worse. I can walk around the house & yard unassisted, but need a cane for VERY short distances, an electric cart in larger stores like Walmart, but to even think of going to the mall I need to be pushed in a wheelchair.

I told him I've been on LDN since Nov. 2008 and having great results....except my legs & balance are getting worse. He said (very firmly) that LDN may very well help my MS symptoms, but it will NOT stop or slow down progression of the disease, and wants me to talk to the MS nurse about starting on Avonex or Copaxone right away. If I don't, he as much guaranteed I will end up in a wheelchair!

As for all the symptoms LDN has alleviated, he said he can give me other meds for those, then asked if I was depressed. I said not at all, but I do get fatigued, and can easily spend 12 hours or more in bed after cleaning my house, doing laundry, or just having a busy day, and he prescribed me Nuvigil. I asked what that was for. He said to give me more energy. How many more new meds will I have to take for my symptoms if I go off the LDN!!

I talked with the MS nurse & told her I believe in LDN, but do not want to end up in a wheelchair. I also asked her, "can't people on the CRAB drugs still end up in a wheelchair? She said, yes, they can. She then said, since the Dr. did not order an MRI, she is going to suggest that he orders one right away. That will tell us whether there has been any progression of the disease in my brain or spine since 2008. If no progression, then the LDN must be working!! I liked her idea!!

The reason for my email is.......are there any statistics as to how many MS patients are or had been in a wheelchair with or without using LDN? Any help regarding my decision to remain on LDN or start on injections, either way, would be greatly appreciated.

[Guest guest]

> Also look into the posts about stopping dairy and gluten as this may cause

> the LDN to work less effectively (again, no " proof " on this, just the

> experience of a few doctors). Disease progression that goes so quickly that

> you notice significant increase in weakness in only a year is pretty

> disturbing, especially if it is continuous and not occurring as part of

> defined relapses (i.e. could it be possible that you are progressive

> relapsing or primary progressive?).

Even less proof, but some of the work by Dr. Wolfgang Lutz showed that serious

carbohydrate restriction stopped the progression of MS. Some of this may have

been _de facto_ reduction in grains, etc., but some of it may have been ketosis,

or possibly some other (fairly sophisticated) aspects of biochemistry that I

won't go into.

His original book- Dismantling a Myth- is now next to impossible to find.

Worldcat.org might turn up a copy near where you live. I can't remember his

specific recommendations, but in " Life Without Bread, " he recommends a limit of

72 grams/day of total carbohydrate- 6 " bread units, " each comprised of 12 grams

of carbohydrate.

I would opine that carbohydrate restriction- to no more than 72 grams per day-

combined with grain elimination and fish oil supplementation would be a good

starting place. If that didn't halt progress, I'd suggest dropping the carbs

even lower. If that didn't work, I'd look at minocycline. See also:

http://www.davidwheldon.co.uk/ms-treatment1.html

-AJ