Please tell me all you can about DMDs/DMTs

[thisiswater]

I'm meeting with my neuro tomorrow to discuss treatment options. I'd like to hear from all of you w/r/t which ones you chose and why? Any other experiences with drugs most welcome. Many thanks!

[Scott1]

Hi,

I took Avonex for the first 10 years after diagnosis and it was very difficult to tolerate. It worked better in conjunction with Valtrex which your neuro will not be interested in. I have not taken Avonex for years now.

In 2014, when I had a major attack, I briefly went on Tecfedira which made me feel dreadful. The same day I went on it the FDA gave it a black flag warning as it can cause PML.

I do not take any conventional MS blockbuster now and I have been continuing to recover.

When he suggests a drug try googling the name + FDA and look up the review. Nearly all of them say they don't know what causes MS and they don't know how the drug works. It's hardly comforting. You could try scrolling down the home page and look at the posts people have made next to each drug.

Regards,

[thisiswater]

Thank you Scott1. To what do you attribute your recovery w/out drugs? Diet, supplements, other lifestyle choices? I'd love to know. Many thanks!

[Scott1]

Hi,

It is a bit of everything. I don't have a standard view of this problem and think is due to the effects of peroxynitrite that is in part derived from an EBV infection. No standard medical practioner will agree but researchers might.

An anti viral becomes central which is why I have been a long term user of valacyclovir. Endless exercise is essential which is why I do pilates and changes in lifestyle related to supplements and diet seem to vary a bit over time depending on what needs addressing.

Try to view your MS as a series of challenges not as a condition with many symptoms that you can do nothing about.

Your doctors will undoubtedly rubbish what I do but I have found it works but you need to be vigilant and sometimes very bloody minded. There is no magic bullet so treat it as a long series of things to be dealt with. Eventually you will see overlaps start to become apparent.

This was my take on things and a history of the last couple of years - http://www.thisisms.com/forum/regimens- ... 24019.html

I don't pretend to have the answers but it does work for me.

Regards,

[thisiswater]

Thanks Scott1. As many predicted, my neuro gave me a lot of Big Pharma SWAG and recommended Copaxone. At the same time, I'm reading Terry Wahls' boo,k The Wahls Protocol, which makes *big* sense to me! I'm surprised I don't see that book all over MS websites/message boards! Her story on YouTube and TEDx are very compelling.

Also, my doc is only 32 so it kind of depressed me that he didn't once mention diet and lifestyle. WHEN, if ever, are medical schools going to teach biochemistry of the body?!

[Scott1]

Hi,

So read the FDA note ( http://www.accessdata.fda.gov/drugsatfd ... 057lbl.pdf) and read the post on Copaxone to form a conclusion. The Wahls protocol is one method and there is no reason that a synergy would not exist between approaches.

I suggest you look at what you need to fix in yourself and deal with each aspect as a problem to solve and try not to lump them together.

Regards,

[kw202]

Thanks Scott1. As many predicted, my neuro gave me a lot of Big Pharma SWAG and recommended Copaxone. At the same time, I'm reading Terry Wahls' boo,k The Wahls Protocol, which makes *big* sense to me! I'm surprised I don't see that book all over MS websites/message boards! Her story on YouTube and TEDx are very compelling.

Also, my doc is only 32 so it kind of depressed me that he didn't once mention diet and lifestyle. WHEN, if ever, are medical schools going to teach biochemistry of the body?!

I was recommended a choice between tysabri, gilenya and tecfidera. I chose tysabri. Today was my second infusion in fact.

I would caution you to research the whole of Wahls' treatment, and also look at other MS diets and protocols. She has had some criticism leveled about the extent to which her recovery was helped by the fact that she received chemotherapy drugs (it strikes me a bit similar to the mechanism of MS drug lemtrada).

I personally have chosen to follow the protocol by Dr. George Jelinek, outlined in his book Overcoming MS. (The basic details are here: https://overcomingms.org/recovery-program/)

[thisiswater]

I've just ordered Overcoming MS! Yes, I was/am aware that Dr. Wahls was receiving DMTs while changing her eating, etc. I find her eating recommendations to be in agreement with mine, and I do believe that eating as she does and using supplements mitigates inflammation. I look forward to reading what Dr. Jelinek has to say!

[vesta]

I've just ordered Overcoming MS! Yes, I was/am aware that Dr. Wahls was receiving DMTs while changing her eating, etc. I find her eating recommendations to be in agreement with mine, and I do believe that eating as she does and using supplements mitigates inflammation. I look forward to reading what Dr. Jelinek has to say!

Greetings thisiswater:

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH
1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet.
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS…http://www.mshope.com.

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help)

Previously Published on my site http://www.mscureenigmas.net/

Best regards, Vesta