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Hello, good people of TiMS,once again I am on the "general discussion" part of this forum, asking about myself. :S
If I am posting in the wrong place, please direct me to the right one.

I need your opinion on my situation. I am fully aware that you probably aren't doctors so please don't hesitate to give me your advice out of fear that you could say something wrong and I would immediately take you up on that. I am merely collecting opinions and trying to approach this from as many angles as I can.

As for my question, I'll try to be brief. I am 26 yrs old and my only encounter with MS so far was in March last year (a bout of ON, fully healed after cortisosteroids). My MRI came back positive (very many lesions on the brain, some discrete ones on the spine, one on the optic nerve), as well as the LP. On my last control (a week ago) my regular neuro was away and his replacement (also a well known and respected neurologist) took his place. She was surprised to hear that I still didn't exhibit any sings of MS other than the ON, not even discrete tingling, numbness or dizziness, and it's been over a year now since the ON. She even said "Well, then you don't have MS", probably meaning that I don't have it YET. I don't know. Nevertheless, she suggested that I start a DMD because my regular neuro did give me a concrete diagnosis of MS due to the MRI and the LP, and also because in many countries it is now routine to start an immunomodulation therapy already at CIS.

So what do you think? My reasons to start are these:
- I firmly believe in REAL medications, in comparison to alternative ones, even though I know they are far from perfect.
- My MRI and LP, as I said, strongly suggest MS, to the point that my regular neuro didn't waste his time to give me a diagnosis

My reasons for hesitating, on the other hand, are these:
- the MRI and the LP only proved dissemination in SPACE. I am still missing dissemination in TIME. I did another MRI 8 months after the first one and it showed no changes.
- I am not exhibiting any signs of MS. I don't mean relapses, just regular small things that everyone with MS seems to have.

Was any one of you in a similar situation? IS it normal not to exhibit absolutely any signs at first?

I'm sorry I failed to make this brief.

DMD are used for temporary relief so if you are not experiencing any problems I do not see why you should be on the DMD. DMD have bad side effects and do not stop the progression of MS. You are very fortunate not to experience the bad effects of MS but I see no reason for taking a drug which could make you very sick. There is a study showing people doing the DMD's do worse than those who do not do them.

http://www.nytimes.com/2012/07/18/healt ... .html?_r=3&



http://articles.mercola.com/sites/artic ... eople.aspx

Hi Melko 321, in your situation I would highly recommend Copaxone. My recommendation is based on the fact it has few side effects...not side effect free but few... and a great deal of research shows it can delay or prevent Clinically Isolated Syndrome from coverting into actual MS.

http://www.ncbi.nlm.nih.gov/pubmed/23234810

"...Early glatiramer acetate treatment reduced CDMS conversion risk by 41% versus delayed-treatment, and was associated with a 972-day delay (185%) in conversion to CDMS, less brain atrophy (-28%, p=0.0209), fewer new T2 lesions/year (-42%, <0.0001) and lower T2 lesion volume (-22%, p=0.0005) versus delayed treatment. Effects of early glatiramer acetate treatment on the rate of conversion to CDMS and on MRI measures of disease activity and lesion burden support initiating glatiramer acetate treatment soon after the first clinical symptoms suggestive of MS and continuing treatment to sustain benefits..."
Best of luck! and keep us updated.

Yes, I would take all steps to protect your health, including, but not limited to DMD's.

melko321 wrote:Was any one of you in a similar situation? IS it normal not to exhibit absolutely any signs at first?

this is what happened to my wife. ON and then nothing for 6 years. no fatigue no depression no heat issues. nothing.

jump ahead 6 years and wham - paralyzed from the waist down.

1) would she have been better if she took DMD's for those 6 years?

2) would she still have "MS" if she did CCSVI procedure after first ON?

if i could answer those question, then i could answer your's.

good luck with whatever you decide to do.

while waiting to decide, it would not hurt you to exercise and eat better

Thank you all for your responses.
Want2bike - although we disagree in many ways, I have to say that the descriptions of Copaxone do raise a doubt in my mind. I've read a Copaxone Warning Letter written by the FDA which reveals the distance those people are willing to go to market their cash cow. All in all - this drug does seem to reduce relapses and lesion number, but not to have any effect on disability. That is also something that discourages me from starting.

Can anyone tell me what does an MS patient gain from fewer lesions if those lesions have nothing to do with disability?

Kronk - I just hope that the study on that link isn't the one submitted by Teva Neuroscience. That was the study that the Copaxone Warning Letter revealed to be very much bloated and the information in it manipulated. By the way, is there any other drug that you would recommend I investigate? I've spent the entire last year learning about MS, but I didn't have the guts to check out all those injectionable medications. I'm sorry if I'm being annoying, but I've read some of your posts and you really seem knowledgeable in the field of MS.

Calireader - I've already changed my diet a little bit, although I don't put much weight on dietary miracles, but who knows. Thank you for your advice.

DougL, I'm sorry to hear about your wife. Thank you for explaining that it is in fact possible not to have any issues, not even the so called "small" ones and still have MS. All in all, I guess I will take the therapy, just so I wouldn't ask myself the same question one day. What a terrible disease.

Hi

- I firmly believe in REAL medications, in comparison to alternative ones, even though I know they are far from perfect.

It all depends on what is causing the problem.
http://www.thisisms.com/forum/general-d ... 24503.html

THX1138

melko321 wrote:My MRI came back positive (very many lesions on the brain, some discrete ones on the spine, one on the optic nerve), as well as the LP.

- the MRI and the LP only proved dissemination in SPACE. I am still missing dissemination in TIME. I did another MRI 8 months after the first one and it showed no changes.

Wow, melko, I wrote you a very detailed response that apparently disappeared because I "submitted" it at the same time the others were posting.

Anyway, to make a long story short, I generally give no opinions on whether or not someone should take a DMD. But I do want to correct your assumption, above. It's my understanding that the fact that you have "very many lesions" on your brain, plus ones in completely different areas (spine & optic nerve) is itself PROOF of dissemination in TIME. There's no way they all popped up together at once...

My neuro makes that point to me whenever I mention that I can't positively identify a single exacerbation in 40 years worth of body weirdness due to my other medical conditions. She says to just look at my brain -- full of classic MS lesions on 1st MRI (including Dawson's Fingers & Black Holes). They were there before I even saw a neuro, and they haven't changed much in 10 years worth of MRIs.

Although it seems too late for me to even consider DMDs, she still offers them, in hopes they'll at least slow something down -- like atrophy. And another note: spinal lesions can be much more problematic, and I don't have those.

Good luck with your decision, and keep investigating all your options. In the meantime, you should try to optimize your health in general with a healthy diet & exercise (NO diet in particular, and NOT a ton of supplements!!).

melko321 wrote: Kronk - I just hope that the study on that link isn't the one submitted by Teva Neuroscience. That was the study that the Copaxone Warning Letter revealed to be very much bloated and the information in it manipulated. By the way, is there any other drug that you would recommend I investigate? I've spent the entire last year learning about MS, but I didn't have the guts to check out all those injectionable medications. I'm sorry if I'm being annoying, but I've read some of your posts and you really seem knowledgeable in the field of MS.

I applaud you for your skepticism and doing due diligence with research. It will go far in a disease that is filled with snake oil salesmen (eg. Mercola) and “cure” speak. That being said I have heard of TEVA’s aggressive marketing and FDA warning regarding it, but I don’t think it was tied to a trial but to marketing material.

The link I posted was to the PreCise Trial, which actually gained FDA approval for its use in CIS. Also important to note it was funded by a project grant from the National Health and Medical Research Council (NHMRC) of Australia.

“…It has FDA approval for clinically isolated syndrome, based on the PreCISe trial, which showed that glatiramer delayed the progression from the first clinical event to clinically definite multiple sclerosis with a risk reduction of 45%. 43% of patients in the placebo group converted, compared to 25% in the glatiramer group…”
The other medication I would recommend is LDN as it has virtually no side effects, its cheap, and excellent anecdotal research. Its great you are addressing diet and exercise, also ensure you are keeping your Vit D levels high.

melko321 wrote: Can anyone tell me what does an MS patient gain from fewer lesions if those lesions have nothing to do with disability?

A white matter lesion often results in a relapse... relapses are scary as hell. And personally I would do pretty much anything to avoid them even if daily injecting only reduces a third a year.

In relation to disability progression the research clearly points more to grey matter loss than to white matter lesions. The grey matter loss was originally identified by Jean Martin Charcot 140 years ago. The research to Grey matter loss in MS since is pitiful, and has almost exclusively focused on the white matter lesions. I found the study below very interesting which showed grey matter atrophy rates in various phases of MS vs. controls. RRMS 3.4x Grey Matter loss, SPMS 14x GM loss. The white matter atrophy rate was 3x controls across all MS disease stages. It seems clear what is driving the root of MS disability.

http://www.ncbi.nlm.nih.gov/pubmed/18661561
Grey matter atrophy in MS

http://www.ncbi.nlm.nih.gov/pubmed/18570297
Gray matter atrophy is related to long-term disability in multiple sclerosis.

How to protect Grey matter
Testosterone – Proven, specifically in MS
Avoid Alcohol – Proven, your grey matter shrinks to protect against damage from alcohol
Vitamin B12 - Proven
Vitamin B6 - Proven
Exercise - Likely
Omega 3 – Likely
The list is long but the items above are just examples

http://www.realnatural.org/b-vitamins-r ... ogression/
B Vitamins and Grey matter

DMDs are designed to help you through the RRMS stage of MS with minimal relapses and symptoms. They typically do not relieve existing symptoms. Other action is required to hopefully prevent the transition to the SPMS stages. DMDs to do not prevent this transition or have any beneficial effect once the transition has occurred, which unfortunately happens to the majority of those of us with MS (but thankfully not all).


I take Copaxone (just coming up on my 1 year anniversary) and so far so good!

"Wow, melko, I wrote you a very detailed response that apparently disappeared because I "submitted" it at the same time the others were posting.

Anyway, to make a long story short, I generally give no opinions on whether or not someone should take a DMD. But I do want to correct your assumption, above. It's my understanding that the fact that you have "very many lesions" on your brain, plus ones in completely different areas (spine & optic nerve) is itself PROOF of dissemination in TIME. There's no way they all popped up together at once..."

Thanks, euphoniaa, that explains a lot. I've read somewhere that cases like mine (and yours, apparently), where lots of lesions are already present at the first clinical attack, are not that rare,and that they suggest a long time of "undercover" disease progression. On the other hand, I've heard stories while I was lying in the hospital - some people said that the difference between their MRIs was staggering, a few lesions on the first one , unchanged in the second one, an then an army of lesions on the third one, as if it wasn't their brain. The beauty of MS, I guess.
As for the mystery of the missing responses, I've had that happen to me a few times as well, that's why I always copy the whole text before submitting.
My MRI showed signs of atrophy as well, unfortunately but it is not uncommon even in RRMS. Why do you say that it seems too late for you to start? SPMS? Sorry to hear that, in any case.
Thank you for your input.

Kronk - thanks for the comforting news regarding the Teva vs. PreCise trial. And for explaining the benefit of the DMDs - reduced relapses for a more comfortable existence. I've read of the gray matter atrpohy and disability, but I was unaware of the fact that it was discovered as early as Charcot, the very doc who identified the whole MS thing. It's really disheartening to see just how little progress has been made on many areas of MS since 1868.
Thanks for the tips for preserving gray matter. I've already done a testosterone test as well as a d3 test, both came back normal, albeit in the lower part of the normal range. I will do my best to maintain those levels. I guess B12 and B6 test is now in order.
I am not familiar with LDN, time for some more research. Thank you so much for such a detailed response.

ElliotB - always good to hear good Copaxone experience. What made you go for it?

melko321 wrote: Thanks, euphoniaa, that explains a lot. I've read somewhere that cases like mine (and yours, apparently), where lots of lesions are already present at the first clinical attack, are not that rare,and that they suggest a long time of "undercover" disease progression.

Why do you say that it seems too late for you to start? SPMS?

I apologize for confusing you -- there was a better explanation of my situation on the lost post. Actually, I've had a long lifetime of weird, MS-type episodes -- possibly since childhood but definitely since carried to the ER at age 22. It's just that every single one of them could be due to one of my many other conditions instead, or even to aging.

And I've gradually developed dozens of minor irritating symptoms over those 40 yrs, although at the time of my dx, right before my 53rd birthday, I was feeling healthier than I had in years due to diet/exercise. Since that day, 10+ years ago, I have had NO exacerbations, just sloooow progression. There's no way I can still be RRMS after 40 years of this.

Even my neuro points out that there's no way to tell if my symptoms are from MS or HNPP (my peripheral nerves are demyelinating, too) or arthritis, etc. Most recently, after reviewing recent Lumbar & Thoracic spinal MRIs, she also noted that ALL my leg problems could be due to my degenerative spine.

But... my brain lesions have stayed relatively "stable" according to the neuro. And I have OLD MS -- no telling when those lesions formed, but you can see pics of them here if you want: http://www.thisisms.com/forum/general-d ... 16335.html

Good luck on your continued research!

euphoniaa wrote: I apologize for confusing you -- there was a better explanation of my situation on the lost post. Actually, I've had a long lifetime of weird, MS-type episodes -- possibly since childhood but definitely since carried to the ER at age 22. It's just that every single one of them could be due to one of my many other conditions instead, or even to aging.

Oh, now I understand. So you didn't have any specific flare-ups, like ON, or at least none that you can remember. They don't call it a disease with a 1000 faces for nothing.

Sorry to hear about all those other conditions, it is said that one autoimmune disease often summons another. But it seems to me like you are not the kind of person to let them get you down, and the brain-cake picture proves it.
BRAAAAINS.

I chose Copaxone over the other DMDs for several reason. The main ones are because it has been proven effective over time, it does not compromise the immune system and was thought to be well tolerated (which was the case for me).

I do not rely on the Copaxone though - lifestyle change (eliminating stress), diet change (I follow a modified Swank and Paleo diet eating only wild caught fish and grass fed meats and very low in saturated fat), supplements (lots of D3 and many others) and exercise (I spend several hours a day (spread out through the day) doing some form of exercise that does not get me overheated).

Good luck!

Thank you, Elliot, I think I will do pretty much the same. Only the diet part wil be loosely based on Swank, not completely. I like to eat.
I know a few more people doing good on Copaxone,I suppose the pros overweigh the cons after all.