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!

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.

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.