Serene Forest

Wednesday, September 27, 2017

Warning About Free Genetic Testing For Periodic Paralysis

Hello All,

I do not do this very often but I feel the need to bring this issue to the attention of all those seeking genetic testing for Periodic Paralysis from a pharmaceutical company who is offering it "free," before you see it somewhere else or in case you have already seen it and are planning to take the test or just wondering about it.
PLEASE BEWARE!!! There are several issues that you need to be aware of before you contact this company (Strongbridge...see link at bottom) for "free" genetic testing.
This company is a 'Big Pharma' company who took over the sales of the latest carbonic anhydrase inhibitor drug that is offered for treating Periodic Paralysis. They are offering 'free' DNA/genetic testing for Periodic Paralysis. They are offering the testing in order to be able to then get you on the drug if you are diagnosed, so they can make the big bucks after charging you or the insurance companies an arm and a leg for a drug that takes a few cents to make.
Carbonic anhydrase inhibitors are diuretics that only some people with PP can take without short term and/or long term side effects, which can be serious and possibly even cause death. I and many of us in this support group (PPN) have had serious effects or have nearly died from trying it or the two other forms of it. (Please read the Blog Article I posted at the end of this article for all the details and history behind this drug as well as the side effects etc, from taking it. There are many links included about the side effects, etc. so be sure to read all of it and the other blog articles I have added to it as well.)
(Those of you who do take it and are successful you are lucky, but may not be able to take it forever and still need to work on the natural ways to deal with the side effects and/or the episodes you continue to have, some from the drug itself. Remember, this PPN Support Group was designed and created for those of us who cannot tolerate the drugs or most drugs....this issue is still not up for debate here.)
Another important point to know about this testing is that it is very limited...only CN4A, CACNA1S, and KCNJ2 will be tested for...leaving out a significant amount of the actual forms that have been discovered so far. This means that it is biased and limited. Up until now only about 50% of the forms of PP have been discovered....so this means that a person has a very slim chance of this testing revealing a form of PP!!
Once you do the testing and the results are negative, the doctors who do not understand this information will then declare that you do not have PP and/or the 'conversion disorder' diagnosis usually follows. So if you have a 'clinical' diagnosis, based on your symptoms, it is best to stick with it and avoid this testing or any other DNA testing (they are all limited and biased)...rather than to risk losing your diagnosis. This has happened to many of our members.
This PPN group is a Support, Education and 'Advocacy' group. This means, besides providing support and sharing information, we also do what we can to keep you safe in all ways. Therefore we advocate for and discuss only all natural ways to manage your symptoms. We cannot advocate for anyone to safely take any drugs, including the carbonic anhydrase inhibitors with what we know about them and what we understand about PP (a mineral metabolic disorder). Nor do we want to be held responsible legally for advocating for them here. We are not doctors nor do we have doctors associated with us, so we cannot discuss drugs in specifics (such as types or amounts, etc.) or tell anyone to take a drug. Please understand that. We can and do, however, provide the information for you to make informed decisions for yourself, which is what we are doing here.
Hopefully, you can see the complete picture now and after reading the following information I am sharing, before you make any decisions to follow through with this company.
I do not want to debate this..this is for informational purposes only...
http://investors.strongbridgebio.com/news-releases/news-release-details/strongbridge-biopharma-plc-launches-uncovering-periodic
Please read the following Blog Article with links to other Blog Articles and medically related articles discussing these drugs.
"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!!

3 comments:

  1. Is there any pointers for seeing a neurology specialist about my PP?

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  2. Hello Peter,

    We have much information to share on how to manage your symptoms in all natural ways on our PPN Support Group and we would like to invite you to join us.

    I am not sure if you have a diagnosis already or if you are seeking one. The first thing to remember is that Periodic Paralysis is a mineral metabolic disorder not a neurological disorder. We see neuros because our symptoms look neurological and they test us in many ways to rule out everything else. At that point, we can be diagnosed clinically, based on our symptoms. Any type of doctor can diagnose us.

    The best way to treat our symptoms involves figuring out our triggers (drugs are the worst ones to include IV's, anesthesia, steroids, antibiotics and over-the-counter) and avoiding them and changing our diet to all natural/organic food with no dyes, fillers, steroids, antibiotics, etc. These are things your neurologist needs to understand as well.

    Anyone can begin to treat themselves before getting a diagnosis or after getting a diagnosis.

    https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

    Regards,
    Susan Knittle-Hunter

    ReplyDelete
  3. We also have much information to share here in the Blog Articles as well.....

    ReplyDelete