Sebruinsma, we are sorry to hear that you still feel completely disconnected from actual help. As a person that also has PPP I can relate. There are many different stages that one will find themselves in during their journey through PPP. First is diagnosis. On our website we have doctors and resources, such as free to you genetic testing, to help patients receive the correct diagnosis. PPP is a complicated rare disease that can, unfortunately, take years to diagnosis and diagnosis the correct form of PPP. There is not only Primary Periodic Paralysis but Secondary Periodic Paralysis to consider. For some patients the PPA is a temporary stop and they find that they actually have a different condition. Second is treatment. Even with a genetic diagnosis, finding the treatment, diet and lifestyle that works can be challenging. If you are clinically diagnosed treatment can have even more challenges. I was clinically diagnosed over 12 years ago with the wrong form of PPP. In the past year I have been genetically diagnosed and my treatment changes have been life changing. We share the news about genetic testing not only to educate but to remind everyone that it is still not done. Third is acceptance. Even once you are diagnosed and are receiving treatment, accepting your "new normal" can be difficult. It can also be difficult for those around you. We are big supporters of finding a therapist that specializes in living with chronic illness. They can help provide tools and resources to help people feel less isolated and alone. There are also FB pages for patients with PPP that provide a safe place to talk about your struggles. We hope that where ever you are in your journey that you find that you are not alone and there is a community there for you.
Sam, we are sorry to hear that you are struggling. There is not only Primary Periodic Paralysis but Secondary Periodic Paralysis to consider. The treatments for Secondary PP can be vastly different than PPP. The good news is most Secondary PP conditions are curably. Have they ruled out a possible secondary PP condition?
Katherine, we are sorry to hear that you feel lost and sad. There are many different stages that one will find themselves in during their journey through PPP. Even once you are diagnosed and are receiving treatment, accepting your "new normal" can be difficult. We are big supporters of finding a therapist that specializes in living with chronic illness. They can help provide tools and resources to help people feel less isolated and alone. There are also FB pages for patients with PPP that provide a safe place to talk about your struggles. Many of us have learned that having PPP doesn't define you but is just part of who you are. You are so much more than PPP.
I’m so glad I saw this. Dr. Cannon mentioned “stressors” used to induce paralysis episodes in mice. I’ve been wondering if my neck pain is one of my triggers. I’ve been searching for the connection between my herniated disc flare ups in my C3, C4 vertebrae in my neck and the resulting potassium drops & paralysis attacks. The only things that help so far are hydrocodone with acetaminophen for pain, manipulating my neck until it pops and relieves the pain and/or taking liquid K. Unfortunately I’m not always able to “pop” my neck and relieve the pressure and pain. I’ve been to see a neurologist. Unfortunately, the doctor did not know how my neck injury affected my drops in potassium. Any clue?! I’m desperate to know how they may relate. Because it happens often now.
Alisha, that is a great question for you to ask through "Ask an Expert" on our website. Here is the link periodicparalysis.org/ask-the-experts-disclaimer/ . I hope they are able to provide you with helpful information.
Hey doc! My mother is suffering from this periodic Paralysis....she can't move a particular body limb...if one night it's one leg then the other night it's her hand ... we've visited multiple doctors according to them she's completely fine....what can i do to cure her...?? Please help me!
I love the fact that you guys exist and that I found you but still feel completely disconnected from actual help.
I just got diagnosed and I feel lost and sad.
Sebruinsma, we are sorry to hear that you still feel completely disconnected from actual help. As a person that also has PPP I can relate. There are many different stages that one will find themselves in during their journey through PPP. First is diagnosis. On our website we have doctors and resources, such as free to you genetic testing, to help patients receive the correct diagnosis. PPP is a complicated rare disease that can, unfortunately, take years to diagnosis and diagnosis the correct form of PPP. There is not only Primary Periodic Paralysis but Secondary Periodic Paralysis to consider. For some patients the PPA is a temporary stop and they find that they actually have a different condition. Second is treatment. Even with a genetic diagnosis, finding the treatment, diet and lifestyle that works can be challenging. If you are clinically diagnosed treatment can have even more challenges. I was clinically diagnosed over 12 years ago with the wrong form of PPP. In the past year I have been genetically diagnosed and my treatment changes have been life changing. We share the news about genetic testing not only to educate but to remind everyone that it is still not done. Third is acceptance. Even once you are diagnosed and are receiving treatment, accepting your "new normal" can be difficult. It can also be difficult for those around you. We are big supporters of finding a therapist that specializes in living with chronic illness. They can help provide tools and resources to help people feel less isolated and alone. There are also FB pages for patients with PPP that provide a safe place to talk about your struggles. We hope that where ever you are in your journey that you find that you are not alone and there is a community there for you.
Sam, we are sorry to hear that you are struggling. There is not only Primary Periodic Paralysis but Secondary Periodic Paralysis to consider. The treatments for Secondary PP can be vastly different than PPP. The good news is most Secondary PP conditions are curably. Have they ruled out a possible secondary PP condition?
Katherine, we are sorry to hear that you feel lost and sad. There are many different stages that one will find themselves in during their journey through PPP. Even once you are diagnosed and are receiving treatment, accepting your "new normal" can be difficult. We are big supporters of finding a therapist that specializes in living with chronic illness. They can help provide tools and resources to help people feel less isolated and alone. There are also FB pages for patients with PPP that provide a safe place to talk about your struggles. Many of us have learned that having PPP doesn't define you but is just part of who you are. You are so much more than PPP.
I’m so glad I saw this. Dr. Cannon mentioned “stressors” used to induce paralysis episodes in mice. I’ve been wondering if my neck pain is one of my triggers. I’ve been searching for the connection between my herniated disc flare ups in my C3, C4 vertebrae in my neck and the resulting potassium drops & paralysis attacks. The only things that help so far are hydrocodone with acetaminophen for pain, manipulating my neck until it pops and relieves the pain and/or taking liquid K. Unfortunately I’m not always able to “pop” my neck and relieve the pressure and pain.
I’ve been to see a neurologist. Unfortunately, the doctor did not know how my neck injury affected my drops in potassium.
Any clue?! I’m desperate to know how they may relate. Because it happens often now.
Alisha, that is a great question for you to ask through "Ask an Expert" on our website. Here is the link periodicparalysis.org/ask-the-experts-disclaimer/ . I hope they are able to provide you with helpful information.
Hey doc!
My mother is suffering from this periodic Paralysis....she can't move a particular body limb...if one night it's one leg then the other night it's her hand ... we've visited multiple doctors according to them she's completely fine....what can i do to cure her...?? Please help me!
Any current research that needs study participants who have this disorder?
Carolyn, not at this time. Thank you for watching and we hope you find the information helpful.