Is there a progression timeline?

[Jules A]

Hello. The comment about 10 good years was probably mine.
That's what the neurologist who diagnosed me after an MRI 14 years ago told me.

She was right, in my case. I know people need positive stories, and believe me, I was the same. Those were the early days of the Internet and I started Beta straight away and I read everything I could.

If your symptoms at diagnosis are sensory or ON that indicates a benign course etc... Good, good, good, I thought.

There was one site where the fellow said, "MS is benign until...". I was so sad, reading it, because I was desperate to believe/hope my MS would be benign and I'd be okay.

Afraid I was living a dream, because bang on 10 years later, my MS started to get bad, but it was a nice long dream.

(It doesn't mean what's happening to me now will happen to you.)

I do apologise if me telling my story frightens people, and I'm not trying to do a "Ask not for whom the bell tolls, it tolls for thee" thing.

I don't think the reality of MS progression when it happens should be swept under the proverbial, though. Even here, the SP/PP message board is buried away.

I'm not that bad all things considered.

Thank you for sharing your experience. I also love the positive stories and have seen what MS can do first hand so I guess that is part of the reason I haven't ever had the need to attempt to embrace denial.

Just because things might be bleak doesn't mean we stop pushing forward and appreciating what we have today. I'm not curling up and surrendering in fact I'm totally exhausted from working so much in an effort to protect my financial future.

Although MS forces most of us to face our physical demise far too early the truth is getting older isn't a picnic for anyone who lives long enough. There is dementia, cancer, CVAs....to me even if I were to live to 85yo before one of the above were to happen it would be too soon and make me wonder if it is really worth it in the big picture.

This life isn't a picnic, imo.

[knuckle]

Snoopy, any others interestetd, regarding pregnancy and MS, I suggest you do a little research on the role of estrogen in suppressing multiple sclerosis during pregnancy.

Treatment of multiple sclerosis with the pregnancy hormone estriol.

Multiple sclerosis patients who become pregnant experience a significant decrease in relapses that may be mediated by a shift in immune responses from T helper 1 to T helper 2.

http://www.ncbi.nlm.nih.gov/pubmed/12325070

[knuckle]

Regarding the new Biogen drug "BG12"...

This drug compound is called "Dimethyl Fumarate" and it has been used for years as a treatment for Psoriasis in Europe sold by a Swiss company called Fumapharma AG. The drug is called "Fumaderm".

Biogen bought the drug rights, ran the FDA required tests, and is now bringing it to market as an MS drug. If you do a little googling with "dimethyl fumarate" and several other autoimmune diseases, like Lupus and Rheumatoid Arthritis, you will find it is being researched as a treatment, as well as for cancer.

Dimethyl Fumarate is also known as "Fumaric Acid Esters". Fumaric Acid is produced during the Citric Acid Cycle in our cells when exposed to sunlight vitamin D. The result is the production of Endorphins.

Endorphins are Hormones that serve to regulate T-cell function in the immune system.

This is how BG12, Dimethyl Fumarate, works, it is regulating T-cells, which are the problem with MS and other "autoimmune diseases". The efficacy of BG12 is quite good in MS clinical trials.

It is interesting that sunlight/vitamin D plays a role here and the higher incidences of MS at latitudes where people receive less exposure unless through a diet of oily fish, which is rich in vitamin D. You need vitamin D to naturally create Fumaric Acid.

[SNOOPY]

Hi knuckle,

I am aware of estriol and the research surrounding it. I am also aware of the many women who thought they were "safe" from relapses simply because they were pregnant.

Unfortunately, many women have found out the hard way, with a relapse, that pregnancy does not protect you

[knuckle]

Regarding LDN and neurologists...

Many neuros, not all, have no idea what they're talking about in regards to Low Dose Naltrexone. Don't know how it works, don't know how to prescribe it, have never bothered to learn about it.

October22 said...

I'm intrigued with the LDN. Talked to the neuro about it today and she said she's only let one patient "talk her into it" and in the end, it didn't work. She didn't believe it did anything to stop progression, it was more for easing symptoms and that was iffy.

Let me know when someone finds a drug that "stops progression".

So this neuro makes this conclusion based on one patient?

Go to the "Useful LDN information" sticky and research more about this drug, experiences by doctors who have prescribed it for 100s of patients, not just one, and people who take it for their MS.

Lastly, there is a company, "TNI Biotech" who is planning to start a LDN clinical trial next year for Secondary Progressive MS.

True Disclosure: I am the Editor of LDNaware.org so I know a lot about the drug, take it, so know more than most neuros about it. I've had MS for about 25 years and have worked my way through most of the DMDs, including Tysabri. I've been taking LDN for about five years.

[KyleW]

I have had MS since 1975 and I am "not disabled" in that my disability score is less than 2. I work full-time, can do most things I want to do, and most of my MS problems are either invisible to others or treated with medication.

I'm with you onlyairfare. I've apparently had MS for at least 22 years and in no way am I disabled.

Kyle

[October22]

?s for Knuckle

You've been on LDN for 5 years - what has your experience been? Is it something someone should take only when they have a lot of symptoms or can those with few issues take it, too?
I like what I read about it but like I said, my neurologist was less than receptive and kind of dismissive about it.

[Cat Mom]

A while back I posted something I read in the MS Society newsletter because it freaked me out. There is a 10 year reference in it.

It stated that 50% of RRMSers will become SPMSers after 10 years, 90% after 25 years. Don't know if this is where you saw 10 years.
Jen

[onlyairfare]

but it wasn't my question - I was just jumping in on the LDN part because I'm trying to find more info on it. I'd also heard the 7-10 years, though.
So nice to hear your story, too!!! Have you taken any of the DMDs?

Also, I'm a newbie -what's a disability score?

There is a measure called Kurtz Expanded Disability Status Scale that goes from zero (normal neurological exam) to ten (death from MS) which is sometimes used in reference to how disabled a person is, or to evaluate how their disease is progressing. Some neurologists believe that if you have had MS for 10 or 15 years or more, and have a score of 2 (minimal disability) or less, you have "benign MS" and probably will not have progressive disability.

There were either no DMDs most of the time I've had MS, or I did not want to take them when they first came out because I was self-employed and didn't want to be formally diagnosed and lose my health insurance. However, I took Copaxone from about 2002 - 2008, and I have been on Gilenya for about 3 months. I plan to continue as long as I can afford it and am not having significant side effects.

[knuckle]

October22:

Go to Youtube and type "LDN Research Trust - LDN Aware Voices" into the search box.

This will take you to a YouTube Channel with interviews of doctors, pharmacists, scientists and patients.

On the bottom right there is a link to people who take LDN for MS. My interview is the first of 161 to date.

The fact is that LDN is completely non-toxic, inexpensive, off-label use of an FDA-approved generic drug. It's no different than a drug like Baclofen in that respect.

At the very least it helps people with MS-related fatigue and "cog fog". At best, it slows progression, maybe halts. It seems to work better in women for some reason. The only thing that seems to hold LDN back from wider use by neuros is no one can make any money of it.

Personally, I think LDN should be the first drug prescribed at the onset of MS and see how the patient does for 6-9 months. Imagine that, a dollar-a-day pill you take before bed that works better than injecting yourself with a $3000 month interferon.

[Alicious]

If your symptoms at diagnosis are sensory or ON that indicates a benign course etc... Good, good, good, I thought.

FWIW, my neuro and ophthalmologist say at onset, not diagnosis, even though it's still a crap shoot.

[KyleW]

A while back I posted something I read in the MS Society newsletter because it freaked me out. There is a 10 year reference in it.

It stated that 50% of RRMSers will become SPMSers after 10 years, 90% after 25 years. Don't know if this is where you saw 10 years.
Jen

To quote a friend's 5 year old, "So what? Who cares? Big deal!" I am diagnosed with SPMS and I'm fine. I'm 22 years in and am in no way disabled

Kyle

[Thinkimjob]

All I can say is good for you, Kyle.

[BigA]

I thought I'd chime in. I'm in the so-called worst general category - male diagnosed in middle age. My first symptom was ON, which is a good sign, but as thinkimjob points out, you might not be in that group.

So let's first disassemble the 10 year quote - and I've heard it so I'll give you my take.

1) it speaks to becoming progressive rather than getting bad. Progressive sounds fast, but it's really that the disease matures somehow changing from an inflammatory mediated to straight progression, like hilly road turning flat. But then how fast is it walking?

2) On average. What does this mean? Nothing for an individual, any more than average height. I'm sure there is an average height of people with MS and that your doctor could estimate patients height and beat the odds in his guesses, but it does not speak to your height.

3) Find out which complementary treatments interest and maybe work for you. This is the opposite of 2) above - you don't care about the averages as much as whether it works for you. Did you know that a cancer treatment is considered successful if the patient is disease free for 5 years? Do you think they stop worrying after that?

4) Exercise and vitamin D are not controversial and are pretty much accepted as helping. Take advantage.

5) None of the meds have been proven to do anything long term. They have been proven to lower exacerbations for 2 years. But that doesn't mean you should not take them. I do - and diet (OMS) and exercise regularly and meditate and take vitamin D and fish oil and have a new lower stress live.

6) I also tell people when I love them, say no when I mean it, be generous and enjoy life.

This can be an opening for you. One more thing - those who are not doing well tend to know it. The rest of us going on about our numb toes and tolerable memory and pain issues (more tolerable through meditation) are more worried than progressing.

I suspect you're fine. Run with it. You don't want to get to a bad place and wish you had. Good Luck

[Cat Mom]

To quote a friend's 5 year old, "So what? Who cares? Big deal!" I am diagnosed with SPMS and I'm fine. I'm 22 years in and am in no way disabled

Kyle

Out of the mouths of babes as the saying goes... so true! Sometimes it really does take a child to put things into perspective. Good to hear you're doing well, thanks for posting this.
Jen