20 year old treatment

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Should I proceed with treatment at this point?

A) Yes
4
40%
B) Not yet
1
10%
C) Try changing your health first
5
50%
 
Total votes : 10

20 year old treatment

Postby n1234 » Fri Feb 02, 2018 7:11 am

Hi everyone :smile: ! I was recently diagnosed with MS about 3 months ago, I was given steroids and I feel better ever since. Me and my family are very hesitant on treatment (Rituxan). I have also received 3 second opinions.
Are there any other younger members that have had experience with this. Can you give me some ideas or recommendations on what to do?

Symptoms started with partial vision, an episode of vertigo and numbness at various times during the year.
What other symptoms have 20 year olds' experienced?
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Re: 20 year old treatment

Postby jimmylegs » Fri Feb 02, 2018 8:05 am

can i vote if i'm over 2 x 20?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: 20 year old treatment

Postby n1234 » Fri Feb 02, 2018 11:52 am

jimmylegs wrote:can i vote if i'm over 2 x 20?



Yes you can :)
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Re: 20 year old treatment

Postby jimmylegs » Fri Feb 02, 2018 11:54 am

done :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: 20 year old treatment

Postby jimmylegs » Sat Feb 03, 2018 6:09 am

and just to follow up / clarify. my position is to work on health whether or not meds enter the picture. not truly an either or thing.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: 20 year old treatment

Postby ElliotB » Sat Feb 03, 2018 6:19 am

The 'common' thought on DMDs is that IF you are going to ever go on one, going on sooner rather than later is probably the best course of action.

But IMHO, working on health in every way is equally if not more important. I do both.
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Re: 20 year old treatment

Postby Zyklon » Sat Feb 03, 2018 7:36 am

Hello,

DMD is only a small part of progress. As ElliotB says the most important thing is getting healthier. You may start with balancing your minerals and vitamins. Being physically active, maybe going to gym. A balanced diet with low fat intake. If you spend time and care of yourself, you will manage MS with minimal impact on your life.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: 20 year old treatment

Postby n1234 » Sun Feb 04, 2018 1:56 pm

ElliotB wrote:The 'common' thought on DMDs is that IF you are going to ever go on one, going on sooner rather than later is probably the best course of action.

But IMHO, working on health in every way is equally if not more important. I do both.




Thank you so much! Will definitely take this into consideration
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Re: 20 year old treatment

Postby n1234 » Sun Feb 04, 2018 1:59 pm

Zyklon wrote:Hello,

DMD is only a small part of progress. As ElliotB says the most important thing is getting healthier. You may start with balancing your minerals and vitamins. Being physically active, maybe going to gym. A balanced diet with low fat intake. If you spend time and care of yourself, you will manage MS with minimal impact on your life.


Definitely have been working on this a lot more especially with my diet! I have been taking Vit D3, B complex, and a multi vitamin. Do you advise to also look into taking Omega daily?
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Re: 20 year old treatment

Postby ElliotB » Sun Feb 04, 2018 2:11 pm

"look into taking Omega daily?"

Definitely! I do.

Essential fatty acids are indeed essential to good health. I also suggest you consider other supplements, including CoQ10. There are soooooo many supplements available. I take 30+.


With regard to Omega 3 fatty acids, consider the following:

There are 3 main sources of Omega 3 fatty acid supplements, oily fish, krill and calamari. The main difference is in the ratio of DHA and EPA. I actually take some of each type on a daily basis and try balance my DHA and EPA ratio as close to 1:1 as possible. Most Omega 3 supplements are much higher in EPA than DHA.
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Re: 20 year old treatment

Postby Anonymoose » Sun Feb 04, 2018 3:35 pm

If your neuro is offering Rituxan as first line med, YOU ARE LUCKY! Most people have to fight and muddle through less effective and/or riskier dmds before their neuros will prescribe rituxan. Insurance is also an issue. You want to take the safest, most powerful treatment you can early on in your disease process. Of all the options available, rituxan is the safest of the most powerful. It’s been used in cancer treatment for decades with relatively few serious complications.

Anyway, if you read through everything you can get your eyes on regarding rituxan and ms, you’ll find it is usually helpful, at least in the beginning. This is probably because, in beginning of rituxan treatment, most likely have open bbb so the rituxan can penetrate the cns in significant amounts. Also, over time and repeated exposures, some do develop antibodies to the rituxan and that can limit its effectiveness.

I researched like crazy about rituxan and other meds. I won’t touch any other ms med but I elected to have rituxan infusions AND intrathecal injections 4x in one month. It knocked me on my butt for four months (triggered iron and copper deficiencies that were hard to figure out) but I then enjoyed 2 years during which I didn’t feel ms-y at all.

If you’re worried about PML, there are things you can do to minimize your risks. First, take a med that doesn’t have a high number of reported PML cases. Rituxan is one. You can monitor your JC virus status and keep track of your lymphocyte counts. Rituxan targets only cells with a cd20 receptor, most B cells and a small number of T cells. You keep the plasma B cells that protect you from things like measles and diphtheria and other bad guys your immune system has identified in your life. So, you’re not super immunocompromised. You can even only have infusions done when your B cell numbers recover.

Diet and exercise are definitely important. But the most important thing is YOU are in control of everything MS that can be controlled. Educate yourself and make your own choices. Set your own terms. Ask your neuro for tests and meds you want. Refuse tests and meds you don’t want (read up on gadolinium/mri contrast and side effects of steroid use so you can make educated choices about them).

Sorry you’re dealing with this...it gets easier over time.

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Re: 20 year old treatment

Postby jimmylegs » Sun Feb 04, 2018 4:38 pm

regimen dtls pls. how much d3? how often? how much b12? how often? which multi exactly? any handy link to nutrition facts on label? any d3 cofactors in the regimen? anything to relay re mineral supplements? any related blood test results?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: 20 year old treatment

Postby vesta » Mon Feb 05, 2018 12:27 am

n1234 wrote:Hi everyone :smile: ! I was recently diagnosed with MS about 3 months ago, I was given steroids and I feel better ever since. Me and my family are very hesitant on treatment (Rituxan). I have also received 3 second opinions.
Are there any other younger members that have had experience with this. Can you give me some ideas or recommendations on what to do?

Symptoms started with partial vision, an episode of vertigo and numbness at various times during the year.
What other symptoms have 20 year olds' experienced?


MY SEVEN STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DE-TOXIFY

After a lifetime of eating badly, ingesting antibiotics and other toxic chemicals, exposure to heavy metals and nuclear fallout, toxins build up in the body and need to be flushed out in order to maximize the benefit of ideal, personalized foods and supplements. Check out DETOXIFY on the Internet to find your preferred protocol. One example:
want2bike (From Thisisms.com)suggested
“Dr. Hyman explains his 10 day detox diet. https://www.youtube.com/watch?v=kgcGlei_JLowant2bike

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? (It takes 5 days to withdraw from a food allergy).

See also my Detoxification and Supplements post.

2. OPTIMAL ANTI-INFLAMMATORY NUTRITION.

See C-Reactive Protein – Key to MS Diet

Diet is critical to many diseases, particularly « auto-immune ». However, areas of vulnerability differ. For MSers it’s the vascular system linked to the central nervous system that matters. Diet impacts production of C-Reactive Protein (CRP) – which in turn impacts the endothelium of the vascular system. Secondly, proper diet acts to reduce cellular inflammation thereby preventing spasms in the veins’ smooth muscle layer. It follows that for MSers proper diet facilitates blood/cerebrospinal fluid circulation. For those without a serious veinous obstruction, diet/supplements alone may suffice to heal

3. SUPPLEMENTS

I have been taking a customized Standard Process Supplement Protocol (with additions) recommended by my Kinesiologist/Nutritionist since 1984 so I won’t suggest a general plan.
As to Diet, consider my post Paleo-Macro-biotic diet.

As a general protocol consult Matt Embry’s
http://www.mshope.com. (food, supplements, exercise, CCSVI).

4. ENHANCE BLOOD/CEREBRO-SPINAL FLUID CIRCULATION - CCSVI

Simple blood/cerebrospinal fluid circulation therapies such as massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. See Acupuncture blog (which includes Tens Self Acupressure) 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 (PTA). 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. Best diagnostic tool – FONAR Upright Cine (as in cinema) MRI.
Professor Zamboni’s recent "Brave Dreams" trial has cast in doubt the effectiveness of PTA (Angioplasty) except in a subset of MS patients which presumably discredits the CCSVI theory. Actually I would say it discredits only the MD monopolized high tech medical model. The Vascular Connection to MS is real, but the origins of obstructions are as varied as their "cure". Promoting blood flow throughout the Central Nervous System requires attention to the individual’s body structure as well as the physiology.

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

6. Homeopathic remedy Oscillococcinum by Boiron to head off a virus. IT WORKS (unless perhaps one is taking a toxic drug. Anti-biotics annul it for me.)

7. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist may help.)
Be moderate in terms of your current condition. Don’t do so much that you throw yourself into an « attack ». (Early on I stressed myself with a « performance » mentality.) Now I walk a minimum number of steps per day and swim when I can.

Be creative. Tif of ThisisMS.com has recovered function with Neuromuscular electrical nerve stimulation in the Onyx Body S haping and Slim Spa which uses “Madame and Monsieur Electro-Slim Technology”. Hugo Macia (http://www.secretosdelaesclerosismultip ... pot.com.es.) is testing on himself a German made Neuromuscular “jacket” to regain function. See https://www.miha-bodytec.com/en/product/

Previously published on my site mscureenigmas.net https://www.mscureenigmas.net/

Matt Embry mentioned above gives a good easy to follow protocol. I think it's crazy to launch into a heavy drug protocol if you don't have to.

Best regards,
Vesta
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Re: 20 year old treatment

Postby frodo » Mon Feb 05, 2018 9:38 am

n1234 wrote:Hi everyone :smile: ! I was recently diagnosed with MS about 3 months ago, I was given steroids and I feel better ever since. Me and my family are very hesitant on treatment (Rituxan). I have also received 3 second opinions.
Are there any other younger members that have had experience with this. Can you give me some ideas or recommendations on what to do?

Symptoms started with partial vision, an episode of vertigo and numbness at various times during the year.
What other symptoms have 20 year olds' experienced?


To understand what it does take a look about the involvement of B-cells in MS. Look only for modern sources, as B-cells were not taken into consideration 10 years ago.

At the end, it is a decision that you will have to take for yourself, but its mecanism of action is something worth reading.
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Re: 20 year old treatment

Postby Zyklon » Tue Feb 06, 2018 3:20 pm

Please consider interferons. If it works for you, you can use riskier DMDs much later.

If you take D3 above 1000IU daily, you must monitor your magnesium level. D3 without magnesium is a bad idea.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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