Surprised by diagnosis, no symptoms, is Tysabri right for me
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Surprised by diagnosis, no symptoms, is Tysabri right for me
Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
http://www.thisisms.com/forum/tysabri-a ... ml#p223183
In addition, in the following study, folks on Tysabri that got PML had roughly an 87% chance of becoming moderately to severely disabled from the PML."Right now, the risk of PML in patients treated with [Tysabri] for more than two years is about one in 75 patients. That's a very high risk," said study author Eugene Major, a senior investigator at the U.S. National Institute of Neurological Disorders and Stroke (NINDS) in Bethesda, Md.
RuSmolikova wrote:Among 38 patients with Karnofsky performance ratings by their physicians at least six months after PML diagnosis, only five were in the "mild" disability category. Half were rated as moderately impaired, and 37% were severely disabled and required custodial care.
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
Here's what I put together for my husband, when his neuro started pushing Tysabri, even though he was doing well. He never took it. And is still doing well, almost 8 years later.
Follow your gut.
cheer
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
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- Getting to Know You...
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
- cheerleader
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
As far as IV steroids---you should be fine. They are helpful in the midst of a flare, and relieve inflammation. You've already had the 5 days of solumedrol, right? Did you do a taper? You should do that. They are oral pills, you take until you get back to baseline. Not a good idea to just stop steroids cold turkey. You'll feel better once you're done.
Take some time, do your research. Look into Dr. Wahls and Dr. Jelinek's diets...everyone is different, and some programs work better for others. Keep moving, keep learning. There was some exciting research from the Karolinska Institute just the other day about how an active, learning mind remyelinates.
http://ccsviinms.blogspot.com/2014/11/h ... n-new.html
Don't feel pressured to do anything until you understand how your body is responding.
Hang in there!!!
cheer/Joan
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
That sounds pretty arrogant. Ask him how much of a kick-back he get's from Biogen for prescribing Tysabri. Ask him about the risk of immune reconstitution inflammatory syndrome (IRIS) which can cause fulminate MS leading to death after stopping Tysabri. http://www.thisisms.com/forum/tysabri-a ... ml#p200117 Ask him if an absolute risk reduction in disability progression of only 12% is worth taking to risk having a brain that looks like this... http://www.thisisms.com/forum/tysabri-a ... ml#p213915 Ask him if all of this is really worth $250,000 per year. http://www.thisisms.com/forum/daily-lif ... ml#p201655cheerleader wrote:I cannot believe your neuro actually said that to you about losing your cognitive ability if you don't take Tysabri....unbelievable!! Would it be possible to find a new neuro who might support you in your search for better health? There are good doctors out there. Might be worth it to look.MomOf4Kids2Dogs wrote:even though my neurologist has warned that I may not have the cognitive ability to understand the argument for drug treatments if I delay starting Tysabri
Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
http://projects.propublica.org/docdollars/
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
B I N G ONHE wrote:That sounds pretty arrogant. Ask him how much of a kick-back he get's from Biogen for prescribing Tysabri. Ask him about the risk of immune reconstitution inflammatory syndrome (IRIS) which can cause fulminate MS leading to death after stopping Tysabri. http://www.thisisms.com/forum/tysabri-a ... ml#p200117 Ask him if an absolute risk reduction in disability progression of only 12% is worth taking to risk having a brain that looks like this... http://www.thisisms.com/forum/tysabri-a ... ml#p213915 Ask him if all of this is really worth $250,000 per year. http://www.thisisms.com/forum/daily-lif ... ml#p201655cheerleader wrote:I cannot believe your neuro actually said that to you about losing your cognitive ability if you don't take Tysabri....unbelievable!! Would it be possible to find a new neuro who might support you in your search for better health? There are good doctors out there. Might be worth it to look.MomOf4Kids2Dogs wrote:even though my neurologist has warned that I may not have the cognitive ability to understand the argument for drug treatments if I delay starting Tysabri
I don't see how one goes straight to the most aggressive drug on the market.
I mean lets be real, what happens when down the road when it could get bad and you NEED tysabri? Yet you have had too many already and are JVC positive.
I don't like your neuro. To say what he said to you is unbelievable. It truly sounds like he gets a kick back from prescribing the drug.
You seem to be doing fantastic so going to the most aggressive drug is honestly just kind of stupid.
Look into other treatment options and a new neuro. Copaxone is simply a synthetic strain of protein that seems to stop the body from attacking itself. Minimal side effects as well. I take copaxone. I started early this year and have had 0 problems from it.
Re: Surprised by diagnosis, no symptoms, is Tysabri right fo
THE 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 - Paleo-Macrobiotic Diet
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)
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