Is this REALLY true?
 

I have relapsing remitting MS and keep reading that MOST people with relapsing remitting MS develop secondary progressive MS.

I am not too happy about this and hoping it's not so??? I've gone off all MS drugs (just stopped very recently with tysabri, tecfidera) and am trying out LDN as MS drugs are too toxic and I don't want to end up with cancer!

I'm completely unaffected by MS past 7 years, I jog every day, never have fatigue and don't even feel like I have MS.... I feel GREAT!!... but have LOTS of lesions... MRI has been stable past 2 yrs though. But I do have 2 very minor new symptoms that started this past year (right side of my face get's "stuck" cramps up when laughing too hard and slight tremor in my hand sometimes. Therefore, it is clear to me this bloody disease is progressing even though the stupid MRI doesn't show new lesions.

This is why I get so aggravated when neuros claim MS drugs are working.... it clearly wasn't working... I have new symptoms I've NEVER had before... which means it is progressing IMO.

True for some but not for all. I have SPMS now, but I had RRMS for 30+ yrs,
before I went into SPMS. The LDN helps to keep me pretty stable and I feel
that my MS has not progressed fast at all. A little worse in disability. Probably
more from age than MS or maybe the combo.

Hang in there, keep a positive attitude and enjoy your remission.:hug::hug:

I agree with Sally in that RRMS doesn't always progress to SPMS.
The one thing that seems to hold true with this disease is that each person's experience with it is unique, even though we often share similar symptoms.

I found my way here when my RRMS became SPMS, but like Sally I had RR for around 30 years first. Having the folks on NT to share with really helps me to understand more about how MS affect people differently and it helps me deal with the challenges that the progression has presented over the past 3 years. Even with those challenges, I have a good life and remain independent...so please know that it is not the end of the world if your MS does become progressive.

The best recommendation that I have, is to focus on living your life now and not on what the MS might do in the future.
I'm glad that you are trying the LDN. It has worked to take the edges off the symptoms for me, especially with respect to cognition.

With love, Erika

Thanks for the replies.

I don't know, this is just freaking me out to be honest, because I have been 100% asymptomatic for the past 7 yrs (totally unaffected by MS, NEVER have fatigue & workout like a horse etc) and now suddenly I had slight tremor in my right hand last week (only if held in strange position) along with the right side of my smile on my face cramping up (getting stuck for approx 30 minutes) sometimes when I smile too hard. I look REALLY strange when that happens because the right side of my mouth is literally STUCK in a smiling position.. cramped up.

This to me this feels like a definite sign my MS is progressing. However, my MRI has been stable - showed NO new lesions past 2 yrs. In fact, they said some lesions have "diminished".

... so if my MS was progressing... wouldn't it reflect that in the MRI? Problem is that my last MRI was done without contrast so I HOPE it didn't miss anything!

Am I totally CRAZY insane to have stopped taking tecfidera very recently? Am I stupid? I know my neuro would think so! I had to switch neuros since my previous one REFUSED to prescribe LDN to anyone. I ended up going to a GP or whatnot to get prescription. Tecidera severely lowered my WBC (elevated both my kidney and liver!) and I am VERY concerned about tecfidera's toxicity and cancer risk. This is why I am moving to LDN since it is not toxic... I just really HOPE it works.

Are you guys ONLY taking LDN? Thanks

Sorry for double post, I forgot to subscribe to this thread and don't know how else to subscribe other than reposting and then subscribing. Forgot to do it in last post.

MS is a TWO STAGE DISEASE
 

The reason for this later major disability stage is that MS is a TWO STAGE DISEASE.

That is why taking a DMD Disease Modifying Drug is a real good idea because it can delay this second stage. Of course it could delay it until you die from more common things like "old age".

jackD

http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf

http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg

.
.

Not always Jack.

I used to have attacks in the first few yrs of the disease, but then all attacks just stopped. I haven't had any attacks in 7 long yrs. This is another reason I am freaking out... from what I've been reading is that people who are transitioning to SPMS no longer get attacks as often? Perhaps my new symptoms are a sign of me entering that phase.

All I know is that I REFUSE to take tecfidera anymore. I refuse to ingest all of the below chemicals (which are in tecfidera) and I fail to see how these carcinogenic chemicals could "delay progression". That's crazy! The only thing it will do is increase cancer risk. A lot of these chemicals they have in the drug are not even necessary.

Active ingredient: dimethyl fumarate

Inactive ingredients: microcrystalline cellulose, silicified microcrystalline cellulose, croscarmellose sodium, talc, silica colloidal silicon dioxide, magnesium stearate, triethyl citrate, methacrylic acid copolymer - Type A, methacrylic acid copolymer dispersion, simethicone (30% emulsion), sodium lauryl sulphate, and polysorbate 80.
Capsule Shell: gelatin, titanium dioxide, FD&C blue 1; brilliant blue FCF, yellow iron oxide and black iron oxide.

titanium dioxide, - carcinogen!!!
magnesium stearate -- carcoinogen!!! http://articles.mercola.com/sites/ar...t-dangers.aspx
sodium lauryl sulphate --- carcinogen!! http://articles.mercola.com/sites/ar...l-sulfate.aspx
polysorbate 80 --- carcinogen!!!!

I'm at the point right now where I can only see myself taking LDN for MS. Hoping that will be enough! :(

Yes - not always.... but it appears that if MS is not treated with a DMD that up to 60% of those with R/R MS will progress later in the 2nd stage to lose the ability to walk.

I do not know how much reduction in that 60% will occur if one takes a DMD but I have found some studies may contain that data.

jackD

What are your thoughts on LDN?

From what I've researched, LDN and similar to tecfidera is some ways, but is not toxic. Guess time will tell... I'll be getting another MRI in 6 months and if my MRI is still stable then I'll know it's "working".

I don't focus on the MRI results too much.

My Neuro likes to tell me that it's like real estate.......location, location, location.

You can have an MRI that lights up with hundreds of lesions but still be asymptomatic. Or......you could have an MRI with just one lesion but that lesion could be in a location that causes all kinds of symptoms.

So, I don't put too much confidence in my MRI. I go by how I feel.

I was diagnosed in 2005 but I believe I've had MS for many years before that. Just never knew what it was and never had symptoms severe enough to check them out.

My vision went haywire in 2005 and that is what sent me to the doctor and eventually got me the MS diagnosis.

Since then I have gotten many more symptoms and I know my MS is progressing. My balance is shot and my left leg is pretty useless. I use a rolling walker to help me walk.

I'm trying Tecfidera right now but my insurance is throwing a fit because of the cost so I'm not sure I'll be able to continue it. Wish they had just denied it the first time. Now I have to potentially stop a medication that I was tolerating very well.

[/URL]LDN is very effective in reducing the damage from excess glutamate which causes BIG nerve damage in 2nd stage of MS.

1st you lose the myelin - 2nd the nerves get cut- neurons get assassinated(BIG loss in function here)

I have lost my links to these articles because the links are just gone to the internet cloud graveyard.

If you get some of my BRAIN TONICS you can reduce this type of brain damage.

http://neurotalk.psychcentral.com/thread199567.html

jackD

p.s. Will post more later. I took a Zanaflex about 10 min ago and must rest or I will fall off my chair ..again!

I tend to think its all a crapshoot whether or not one will progress and if the DMDs are really working. No one can really give you a definite answer either. And, lesion load doesn't equate to disability either. It's such an individual thing and each of us is different with the same label - MS.

I have not been on a DMD for a few years now. I don't notice a difference other than i am not have severe allergic reactions from taking C. My rate of flares hasn't changed either. I'm still averaging 2 a year. Of those flares, I still have the same amount of lesions. It's the same lesions causing me trouble over and over.

Oh my goodness. To go by "how you feel" as "Kitty" in this thread mentioned is a HUGE and foolish mistake!!!

I was asymptomatic for several years. I felt awesome... as if I did NOT even have MS. Since I felt completely 100% NORMAL, I didn't bother getting MRIs. Even my neuro never told me I should get yearly MRIs since I was symptomatic. All he cared about was me staying on avonex (which as it turns out, didn't work at all because I progressed like CRAZY while taking it). Skipping MRIs was a HUGE mistake. Because of that stupid neuro who SHOULD have known better, I didn't bother getting an MRI for 6 years... because as mentioned, I felt like a normal person without MS with NO symptoms!

Then I finally got some common sense and went to have an MRI. I was SHOCKED at how many, I mean TONS of active new lesions I had (even had them in my brain stem). My neuro was shocked at how much my MS has progressed. My MS had progressed SEVERELY in only 6 yrs time and I didn't even know it.

I will NEVER be foolish enough to judge my MS in any shape or form by "how I feel". MS can progress tremendously without you even knowing it. Thus why MRIs are so important!!!!!!!

Sorry for the rant, I'm angry not only at this irresponsible neuro, but also at myself for not placing more importance on MRIs because with MRIs you can clearly see how much progression is occurring. Going by "how you feel" ain't gonna work! I can only hope LDN will help keep my MRIs stable.

They treat MRIs scans these days, in the past they would treat the patient and not the scan. The head neuro from Johns Hopkins said "he does this because he doesn't like to see a brain get destroyed".

Tricia, I totally agree with you. It's a crapshoot. And lesion load surely does not equate to disability.

I'm sure any imaging center will be happy to let patients have as many MRI's as they are willing to pay for. Unfortunately, MRI's simply cannot tell you how disabled you will become based on lesion load.

LillyMS, I'm sorry you feel that I'm irresponsible and foolish not to put more weight in my MRIs but I've had MS for years and so far the MRI has not matched the level of disability I have (or had).

Ya, I'm fully aware of how some pople can have only one or two lesions but are in a wheelchair. Whereas on the other hand, people like me who have horrible volume lesions are fine.. for now at least. It really is crazy when you think about it.

I know the analogy you could use is: Someone shooting a gun in a dark room and if the bullet hits the light switch that controls the light in the room... then that room is screwed!

Still, I feel like a ticking time bomb with so many lesions. One neuro said I'm on the verge of serious problems if I don't get on MS drug and that "the only reason I'm doing so well is because I'm young". I don't believe that for one second. I'm not even that young anymore.

The radiologist wrote the following my my MRI report:

“extensive white matter disease suprantentorially as well as along the brain stem and cerebellar peduncles."

All I have to say is I don't like the word EXTENSIVE or any of the other words in that sentence! I'm a bit freaked out to say the least. That is saying I've got disease several places in the brain, not good.

Take a look at my attached MRI report. As you can see my MS progressed SEVERELY. I have a TON of lesions. This MRI was done couple years ago, since then it's been stable... but look at how AWFUL my MRI is. The radiologist forced me to see the neuro right away immediately after he removed me from the MRI machine. He wouldn't allow me to go home. I didn't even have appointment with neuro that day! Luckily, neuro was in same building.

I really feel like I'm screwed. I feel like a ticking time bomb. Don't know what else to say. Anyone else here have scans this bad? I was symptomatic, yet look how bad my MRI scan results were. Yet as you know, some people with only one lesion can be in wheel chair. This is crazy stuff!

My research indicates that a high lesion load is a strong indicator of future long term disability. There may be other factors such as DMD drugs that could alter this outcome.

jackD

I am totally screwed. I am only 34 yrs old (very athletic female... run 3 miles every day on my thread mill etc) and should enjoy the days I have left. I got MS in 2002... it is now 2014... even though my MRIs look TERRIBLE I am still doing way better than 99% of others with MS because I feel completely normal as if I didn't even have MS. Unfortunately, I doubt this will last!

I will not be taking any MS drugs. Just giving LDN a try and getting MRIs every 6 months. If new lesions start to form I will then get back tecfidera as my last resort. Have to give LDN a shot first.

EDIT: For those participating in this thread... do you have anywhere near the volume of lesions I have? I am seriously freaking out here. This is not good :(

This is really confusing. I think I just found a contradictive article here:

https://www.facebook.com/notes/ccsvi...51429538792211

Note: I merely glanced at this article (don't have time to read it now), so hope I'm not wrong.

bit of advice...Stop googling. Trying to research MS stuff online can cause a lot of people a ton of stress.

If you're worried about what the MS *might* do to you someday. Try not to. Focus that energy on keeping active instead.

Sodium Lauryl Sulphate's a carcinogen?! I had NO idea! It's in toothpaste, that I do know, because I buy toothpaste without it at the suggestion of other folks who have burning mouth syndrome. Eeessssh. The stuff these companies put into products we use for whatever reasons... why why why?! I don't know who this "Dr. Mercola" is, but those websites look almost spammy. I wouldn't put all your chips into the information there, just saying.

Edit: I have a large amount of lesions, and my last MRI shows I have 2 active - one's a repeat, one's new. I don't (personally) believe in the DMDs, or other "therapies" for M.S. LDN may be a good option though. I have to echo the "carpshoot" sentiment.

I'm 37 and feel like I'm 30 some days, others I feel like I'm 65. I agree with what Erin says, stop Googling. Have good, open communication and discussions with your specialists and doctors. Tell them how you feel. Your worries, fears, ... that you're concerned you'd been stable, and now you're noticing certain symptoms.

Hugs <3

when I was still being diagnosed, I drove myself absolutely insane with all the googling. Even now, I tend to over-google symptoms. Trying to figure out what's going to happen with the MS.

Hopefully I've been able to force myself to stop. It just makes me more and more nervous about what's going on.

A couple of decades ago, Dr. Mercola (a naturopath), introduced the general public to natural remedies and preventative health care strategies. With the passing of time, he has become more of a marketing promoter; especially for supplements that he has a vested interest in.

If you did everything and took all the supplements that Dr. Mercola suggests, you would have a full time job just procuring and swallowing all the capsules, teas and other supplemental supports...and would be broke in short order.

Eat well, exercise, listen to your body and mind...and live a happy life.

With love, Erika

Me, too. Fear can do more harm to you, physically as well as mentally, than any disease can do.

When I was waiting for my diagnosis I googled everything I could find and got just as many diagnosis'. It was maddening! I had eventually self-diagnosed myself with a brain tumor so you can imagine my relief when the doctor said "MS"! He was a little taken aback at my relieved reaction but understood once I explained to him what I thought I had. :o

Laura gave you some good advice. Talk to your doctor and let him know your feelings. Make sure your doctor is a good fit for you....not all doctors are.

Google wasn't around (or at least it was, but not in my home or even in my knowledge-sphere when I got Dx'd in 2001 - I think I had heard of it, but it was a world away from me).

Still, there was lots of media-hype about motor neurone disorder at that time, so when I started slurring my words, going numb, losing my vision, pee-ing myself and tripping all over everything I was terrified and thought 'this is it'. I was only thirty-two and had two small children.

My diagnosis ended up being such a relief, although I was convinced, with everything I read and saw (and later Googled - because my computer ignorance didn't last long: I had a physical job back then and had to 'reinvent myself' and do something less demanding) that I was primary progressive.

Time told the story and I re-trained, became a teacher (in my industry, teaching business and retail to adults) - I have done this for ten years, and so far - touch wood, I have not progressed too badly.

Knowledge IS power, but sometimes, it is debilitating - you just need to be careful that you don't make it a 'self-fulfilling prophecy'.

Just my humble thoughts

xx

Thanks for all the replies. I'm taking LDN for the first time tonight. I'm eager to see what happens.

It is CRAZY what companies will put in your food as well as vitamins/drugs. More often than you realize, they are putting toxic chemicals into your food here in the US. Chemicals that are actually BANNED in other countries!!

Please google "foodbabe" and check out her website. This girl "Vani Hari" is my hero, she is fantastic! Subway was, and is probably still is, putting a toxic cancer causing carcinogen called "azodicarbonamide" into their bread!!! The same chemical used to make yoga mats! This girl has been featured on CNN, USA Today, The New York Times, Dr Oz Show, The Washington Times... this is girl taking on huge food companies and corporations (such as Monsanto and their dangerous GMOs) head on!! Check her out.

Biogen is no exception, their drugs have certain added chemicals that are NOT of any benefit to the patient. It's always about money money money and more money. The more they can increase their margins the better and screw the people!!!! I am not a fan of big pharmas.

It is not surprise why cancer is on the rise. The amount of cancers we are seeing today is just NOT normal. I confess I am super paranoid about getting cancer and don't appreciate these jerks putting more unnecessary added carinogens into my food and drugs!!! I no longer eat any processed foods.

Good luck with that!


Crapshoot, good description.


Yep, you're screwed. :rolleyes: We should all be so screwed. I only have a few lesions and can hike in the woods for an hour and barely crawl home.


For every article/study, there is an equal and opposite article/study.


Lilly, if you start going downhill tomorrow, I suspect you'll blame it on your lesions. Some of us might think to ourselves that you Googled yourself into a tizzy. You seem to be quite focused on something bad that may or may not happen. How about centering on what you can do and control? A lot of us only dream about running, much less 3 miles a day. You have a lot going for you; try thinking about that.


Again, good luck with that! And when I say "luck", I mean luck.

I know I have to relax and stop googling myself into insanity. It is just shocking to me how I went from one tiny little lesion to well over a dozen within just 6 yrs time. My MS has progressed severely is what every neuro I have seem thus far keep telling me (I've even seen the top neuro at johns hopkins in baltimore and the neuro who "trained" with him in Miami).

I am SUPER thankful I am doing so well and able to be active as if I were normal without this *** disease. It did attack my legs once and I was unable to run for 3 weeks (even affected my walking), it sucked!! I know many others aren't so lucky to resume as normal, I can't help but feel doomed... like "it's only a matter of time". When I was on tybsabri, the infusion room was more than depressing. I have never seen so many people in wheel chairs before and they all had MS. Difficult to stay optimistic!

You guys should checkout the "foodbabe". I think that girl is fantastic. It is incredible how much she's made a difference. Big hats off to her :)

PS: I agree that MS drugs are indeed a crapshoot.

hi lilly,

i agree with trying to predict the future will make you crazy. i like to tell people that no one knows what the future holds, even healthy people.

the nature of MS is that it's a non curable, progressive disease. it's also an individualized disease. we're all different.

meds are a personal choice/decision. i was dx'd at 53 and i'm 65 now. i took copaxone for 10 yrs and have been stable. symptomatic but still walking and driving. because of that i made the decision, along with my dr, to stop the med. knock wood, i'm still ok. i know it could change but it's not worth worrying about until it happens.

i try to take one day at a time. just deal with what's in front of you. worrying about being in a wheelchair 20 yrs from now is just too exhausting and won't accomplish anything.

try to make informed decisions. pick drs that along with you will be your best team. i find having a plan in mind gives me control and makes me feel more powerful rather than helpless and afraid.

you've made your plan with the LDN. give it some time.
i hope you do better. let us know.

I finally took my first does of 1.5mg LDN last night and had NO reaction to it at all, so this was good news.

Since I had no reaction would I be stupid to take 2 pills tonight so that I get 3mg? I'm really uncomfortable taking only 1.5mg as I'm worried it is not doing anything beneficial in such a super teeny dose. I have an appointment this Friday with another MD who knows LDN very well (this MD also used to be a radiologist so that is a huge plus!), but I was wondering if I should up the dose in the interim you think?

Also, I actually have a 3rd new symptom that I didn't mention before. Past 2 weeks I've been getting up to pee like a race horse 5 or 6 times a night! I know MS can affect the bladder. This is yet another disappointing sign Tecfidera was NOT working because I went from being 100% asymptomatic past 7 yrs to getting hit with 3 new recent symptoms almost all at once!

I'm not allowing myself to drive myself crazy anymore with googling things constantly, but am I correct in thinking that tremor most often happens in more advanced MS and is a sign of progression? (I've had MS for approx 12 yrs). Or do tremors also happen in RMMS very early on?

Thanks for all the replies :)

Aren't you supposed to slowly work your way up on the dosage of LDN? I would do whatever the doctor specified on the Rx. Don't rush your way thru it.

MS does what it wants, when it wants, and where it wants. I don't think specific symptoms only happen once a person progresses to a certain point.

I think there's physical therapy exercises that are supposed to help with things like tremors. Talk to your doctor.

Ya, those are my thoughts exactly. I don't want to mess around taking something that is as effective as a sugar pill even for a few days. I must not be sensitive to it because I had NO reaction at all to 1.5mg.

My MS is rather active (3 new symptoms, not good!), so I really feel uncomfortable taking something that I highly doubt is effective... referring to 1.5mg. I think I might take 2 pills tonight so I get 3mg, unsure.

This is depressing that I now have to pay this new MD $375 (that is their cost for office visit) because they don't take insurance and I'm poor right now. The prior MD (who only cost $65 for office visit & prescribed me the 1.5mg LDN) I saw last week was awful. He told me MRIs (even without contrast dye) are detrimental, didn't know what gelatin is and told me he would REFUSE to increase dose from 1.5mg to anything higher unless my MS did poorly on that small dose. I almost got into an argument with him (he got very uptight when I politely questioned him about my concern regarding dose) and he told me if I don't follow his rules I need to go somewhere else, so that's exactly what I'm gonna do! This is why I'm now seeing another MD this friday.

I would, but that's me. Anything less than 3mg is dumb,
unless you are super sensitive. See what your new Doc says.

NOTE...Make sure that the pharmacist who compounds your LDN, uses
pure naltrexone powder and doesn't just grind up naltrexone pills.

SallyC,

Thanks, I'm using Skips Pharmacy. Everyone tells me they are really good. If you google them you can see the pharmacist there speaks at conferences regarding LDN for MS, so it appears they know it well which is good news.

I think I'm going to take 2 pills tonight so I get 3mg, because I don't see the point of 1.5mg, especially since I had no reaction to it... or I'm going to have to go back on tecfidera in the interim until I see the MD this friday. I'm SUPER uncomfortable taking only 1.5mg... very concerned it will cause some potential problems. I have way too many lesions to start messing around like this. I Know I need to be on something and I don't want to be popping something that is potentially totally ineffective.

This way I can bring up my concern to this new MD I'm seeing and hopefully he will then give me the go ahead to take 3mg since I had no reaction to 1.5mg. So it looks like I'm going to go back to taking tecfidera in the interim even though I really don't want to! I just stopped tecfidera 2 days ago actually.

I also use Skips. They're the best.
Good luck!!

The heck with this, I think I'm going to take 3mg tonight. I keep reading how so many others started 3mg of LDN:

Quote:
=======
"l have been taking LDN for about 3yrs. l noticed benefits almost straightaway - but l did start on 3ml. l have only to miss one days dose to notice a difference. My MS has not progressed since l started taking it - l now take 4.5ml daily."
=======

I REALLY do not want to take tecfidera in the interim until I see this MD on friday as it gave me leukopenia (WBC below the safe range - even the "fine print" on this drug says to STOP taking it if that serious side effect happens!). My neuro is irresponsible for telling me to continue on tecfidera considering how bad my bloodwork was from it.
I notice the above quote I included was referring to "ml" rather than "mg"....so it appears that person was taking liquid LDN?

Thanks.

EDIT: If I'm still alive tomorrow after taking 3mg I'll post here and let you know how it went :lookaround:

It took about a week for me to notice that the LDN was having an effect and that was at 3mg. It may take a while for it to have an effect for you as well, so don't expect your symptoms to miraculously change overnight.
I strongly agree with Sally and your hunch. Take 3 mg.

With love, Erika

Thanks for all the responses, you guys have been very helpful.

The decision has been made. I'm taking 3mg tonight and will report back in the morning if I had any reaction to it (meaning if I have any "bad" reactions to LDN). Thankfully, I had no reaction to the 1.5mg, so hopefully 3mg will be same).

EDIT: Erika, are you only taking LDN or other MS drugs as well? Sorry if you already answered this in the past recently, I don't recall.