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.

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.

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



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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".