NEED HELP WITH MY TREATMENT.PLS READ ME!

Tell us what you are using to treat your MS-- and how you are doing.
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SARABAND
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NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by SARABAND » Wed Nov 26, 2014 5:27 am

Hello everybody. Thanks for reading my post.
I was diagnosed with MS 7 years ago after an optic neuritis which was treated with esteroids and fully recovered from it. I had
another flare up in March this year which affected the sensitivity of both my legs but I fully recoverd after a month. I have NEVER used any medication. I feel good, have no signs of tiredness whatsover, I swim on a daily basis..basically I feel the same than before the MS diagnosis-hence my refusal to any kind of treatment that potentially would make me feel worse due side effects. My neurologist fully supported me on this decision(until now)

Despite this, my MRI always shows new brain lesions and some degree of inflamation. Always. There are no signs of cerebral atrophy and my inmune system is still able to achieve some remyelination.

I live in Madrid, Spain. In January next year Tecfidera will be available here and my neurologist reckons that I should start taking it. Up to now there were no oral treatments here, just one that apparently has quite some side effects. He says that it has shown great results and have few side effects compared with the inyectable ones.

I am quite puzzled about all this: on one hand, I want what´s best for me-obviously-but on the other I´m scared that I will feel bad and unable to continue with my daily routine.

Anyone shares the same thoughts or is in my situation? I´m confussed as of what to do..(remain untreated vs Tec)

Many thanks for your help in advance and thanks again for reading my post.

Kind regards! Saraband

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Scott1
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by Scott1 » Wed Nov 26, 2014 2:23 pm

Hi,
If you intend to take Tecfidera then make an informed decision. This is the FDA note on that drug - http://www.accessdata.fda.gov/drugsatfd ... 063lbl.pdf
This article has information on the mechanism and history of the product. Table 1 highlights the development of solid tumours - www.dovepress.com/getfile.php?fileID=19457

This is a warning issued yesterday by the FDA about a death caused by Tecfidera where the virus, JCV, developed into the untreatable and fatal PML.- http://www.fda.gov/Drugs/DrugSafety/ucm424625.htm

The mechanism supporting Tecfidera is that it shifts the immune response from Th1 to Th2 and it lengthens the time between attacks. Some herbs and some flavonoids will do that as well.
Regards,

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NHE
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by NHE » Thu Nov 27, 2014 2:11 am

Scott1 wrote:This article has information on the mechanism and history of the product. Table 1 highlights the development of solid tumours - http://www.dovepress.com/getfile.php?fileID=19457
The article appears to be poorly edited. The chemical structure for dimethylfumarate in figure 1 is incorrect. What figure 1 actually shows is fumaric acid. See http://www.thisisms.com/forum/drug-pipe ... ml#p201134 for a discussion of the correct structure shown below.

Image

ElliotB
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by ElliotB » Thu Nov 27, 2014 3:54 am

DMDs are supposed to reduce the frequency of relapses. Since you seem to be relapse free, there may not be any point at this time in taking a DMD.

My brother who also has MS and has had it for about 14 years had chosen not to take any medication, against his doctors recommendation. And has relatively few relapses over the years and frankly is doing fantastic. So going drug free was the right choice for him. I have made drastically different choices for myself including a DMD.

But there is still plenty you can do for yourself with regard to diet, exercise, supplements and lifestyle change that may help slow the progression of the disease. IMHO, the purpose of making changes in these areas is to insure the best possible health 10-15-20+ years down the road.

SARABAND
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by SARABAND » Thu Nov 27, 2014 4:09 am

Hi, many thanks for the info.

Scott1: Which herbs and flavonoids are helpful for this?
I´m fond of natural treatments but somehow a bit sceptical.

Best Regards.

SARABAND
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by SARABAND » Thu Nov 27, 2014 5:09 am

Hi ElliotB and thanks for your prompt reply.

It is a tough decission for me to start taking a medication at this point, as I am feeling fine. But I´m afraid that continuing drug free will lead to a completly different scenario in a few years time: I´ve been explained that although I don´t have many relapses there is continous inflamation which may lead to cognitive problems in the long run.

Still confussed as if investing in the future by "feeling worse" in the present is worth it. I am sure I do have a present,but who knows what the future offers me??

I also wanted to know if anyone is aware or has used what is called BIOMAGNETIC PAIR/BIOMAGNETISM

It is a natural therapy that proposes diagnosing and treating a large number of illnesses through the use of pairs of magnets. And claims to have really good results in MS.

I had two sessions prior to my MRI, and even though there were 5 new lesions it was the first time ever that I had no active ones! There was no signs of Gadolinium-enhanced lesions at all. Which is obviously good. Not sure wheather it has something to do with what I´ve explained previously or just coincidence..

Best wishes to everybody!

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Scott1
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by Scott1 » Thu Nov 27, 2014 2:17 pm

Hi,
There are rather a lot but look at Green Tea extract, Curcumin and Resvesterol as a start. (Just google Th1 plus any of those and you will find lots of articles)
On the herbal front I think Cordyceps Sinensis but it is dose dependent and would strongly recommend you read "Healing Lyme disease coinfections" by Stephen Harrod Buhner ( for Coryceps pages 127-140) before just grabbing any old herb as they can be very strong and you should treat them just like you would a conventional medicine.
Regards,

Youarethecure
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by Youarethecure » Sat Nov 29, 2014 10:00 am

Have you considered other medications?

Personally I am not down with the pills. I don't like the side effects, I don't like that they have to go through your entire bodies systems. Also, with side effects I want them right there on the spot. I don't want to wait 2+ hours or more for something to crop up.

A lot of the injection medications leave you feeling sick, tired, worse then just having MS a lot of the times. I also don't like that most of these drugs inhibit your immune system. I don't agree with slowing or hurting one part of my body to save the rest.

These reasons are why I ended up on Copaxone. The only side effects I have ever dealt with only have to do with the injection sites. That tends to be how it is for most people as well. It is simply a synthetic strain of protein that "seems" to make the cells stop attacking our myelin. It is one of the first medications from the beginning too.

Best of luck,

Chris

SARABAND
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Re: NEED HELP WITH MY TREATMENT.PLS READ ME!

Post by SARABAND » Sun Nov 30, 2014 12:13 pm

Thanks Scott1. I will look into it

Youarethecure: Yes, I have looked other meds. In fact I was offered Copaxone and Avonex at the beginning, which I turned down and remained untreated up to now. If I had taken them it would have seemed that they worked as I had no flare ups during that time. I was under the impression that Copaxone could modify immune response and it may interfere with immune functions, like the others. Glad to hear that you don´t have side effects from it. That´s fantastic!!
To be honest, I don´t see why I´ve been told that Tecfidera is better tolerated, more specific and with less side effects...

Thanks for your replies!

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