Making treatment decisions - new to the forum

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Making treatment decisions - new to the forum

Postby smo3 » Thu Dec 22, 2016 2:31 am

Hi, just signed up as I'm looking for some input/support on choosing a treatment option, I have rrms but have been told it's fast acting so I 'shouldn't delay' starting treatment. They have offered me the option of basically anything available (UK) but are pushing towards Tysabri or Lemtrada both of which seem to have fairly terrifying side effect potential.
Would appreciate anyone's personal experiences having taken either of the above and how you actually came to the decision in the first place.
Many thanks
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Re: Making treatment decisions - new to the forum

Postby Boudreaux » Thu Dec 22, 2016 7:05 am

How do they know it's fast acting? Have you gotten a second opinion? I don't think anyone can just assume they know how your case will play out over your life.

I too am concerned about the side effects of these DMD's which is why I declined them.
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Re: Making treatment decisions - new to the forum

Postby jimmylegs » Thu Dec 22, 2016 9:13 am

i too declined dmds but there are loads of folks on here using them. could be an idea to check in with folks posting below, in the tysabri and campath treatment forums specifically.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Making treatment decisions - new to the forum

Postby smo3 » Thu Dec 22, 2016 11:31 am

Boudreaux wrote:How do they know it's fast acting? Have you gotten a second opinion? I don't think anyone can just assume they know how your case will play out over your life.

I too am concerned about the side effects of these DMD's which is why I declined them.


Hi Newbie - the fast acting comment was based on the comparison of 3 MRIs each 6 months apart and the increasing number of active leisions :(
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Re: Making treatment decisions - new to the forum

Postby Boudreaux » Thu Dec 22, 2016 11:41 am

smo3 wrote:
Boudreaux wrote:How do they know it's fast acting? Have you gotten a second opinion? I don't think anyone can just assume they know how your case will play out over your life.

I too am concerned about the side effects of these DMD's which is why I declined them.


Hi Newbie - the fast acting comment was based on the comparison of 3 MRIs each 6 months apart and the increasing number of active leisions :(


Got it. I would still seek a second opinion. Best of luck.
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Re: Making treatment decisions - new to the forum

Postby jimmylegs » Thu Dec 22, 2016 12:12 pm

opinion from outside the mainstream disease management machine:
if you have not already done so, you can take independent action ensure you do not have any of the characteristic nutrition issues seen in ms patients. tons of related info available here on the site. basics are easy. step 1. detailed 3-day log of food servings, fluids, meds and supplements. ideally 2 of the days represent a typical day 'out at work' or equivalent, remaining day characterizes weekend or 'around the house'. i am around the house all the time but i still have a week day pattern and a weekend day pattern so the difference would show up regardless.
after that, some figuring out where you stand in comparison to recommended daily minimum (and max) amounts for essential nutrients. best case scenario, you gain confidence that you are doing everything perfectly according to public health guidelines and this ms thing is coming out of nowhere. reality: nobody actually is, so it's worth doing whatever you can to help optimize your health - and giving the expensive approaches as small a job of work as possible! :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Making treatment decisions - new to the forum

Postby smo3 » Thu Dec 22, 2016 12:32 pm

Thanks Jimmy Legs - luckily for me I'm married to a nutrionalist so would say I'm pretty well sorted in the 'good eating and supplements' department, is excellent advice for everyone though :)
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Re: Making treatment decisions - new to the forum

Postby jimmylegs » Thu Dec 22, 2016 12:47 pm

ooh great news! couple follow-up questions: what are your daily intakes of b12, vit d3, magnesium, zinc, and copper? your wife may already know that these ones (either by themselves or in ratio) are particularly relevant for ms patients
do you have serum levels for any of those on file?
i am very much looking forward to hearing your reply - it will be downright fascinating to me, the first time someone shows up here who really can demonstrate ideal nutrient status and still finds themselves in the ms diagnostic grinder.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Making treatment decisions - new to the forum

Postby NHE » Thu Dec 22, 2016 10:13 pm

smo3 wrote:Hi, just signed up as I'm looking for some input/support on choosing a treatment option, I have rrms but have been told it's fast acting so I 'shouldn't delay' starting treatment. They have offered me the option of basically anything available (UK) but are pushing towards Tysabri or Lemtrada both of which seem to have fairly terrifying side effect potential.
Would appreciate anyone's personal experiences having taken either of the above and how you actually came to the decision in the first place.


Personally, I would not take Tysabri as a first line treatment (and likely not ever). I believe that the risks are too high and the potential benefits do not justify those risks.

For example...

In this study, 87% of the people diagnosed with PML and who survived were left with moderate to severe disability due to the PML.
tysabri-antegren-or-natalizumab-f11/topic17249.html#p173579

A brain on PML in exchange for a relative risk reduction in progression of 41% (absolute risk reduction is just 12%).
tysabri-antegren-or-natalizumab-f11/topic22315.html#p213915

Even getting off Tysabri can be problematic.

Lethal Multiple Sclerosis Relapse After Natalizumab Withdrawal
tysabri-antegren-or-natalizumab-f11/topic21087.html#p200117
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Re: Making treatment decisions - new to the forum

Postby vesta » Sat Dec 24, 2016 1:10 am

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet. https://www.youtube.com/watch?v=kgcGlei_JLo
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 as 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. Best diagnostic tool – FONAR Upright Cine (as in cinema) MRI

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.)
Be creative. Tif of ThisisMS has recovered function with Neuromuscular electrical nerve stimulation in the Onyx Body Shaping and Slim Spa which uses “Madame and Monsieur Electro-Slim Technology”. Hugo Macia (www.secretosdelaesclerosismultiple.blogspot.com.es.) is testing on himself a German made Neuromuscular “jacket” to regain function. See https://www.miha-bodytec.com/en/product/
He has brought to my attention the Bio-Magnetic Pair therapy used widely in Spanish speaking countries. It may prove useful as an “energy” therapy like acupuncture, in this case magnets are used to harmonize the body’s electro-magnetic field. Maybe worth a try.

Previously Published on my site www.mscureenigmas.net/

Best regards, Vesta
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