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Periodic Paralysis or Hypokalemic Periodic Paralysis

Posted by amber3212 @amber3212, Mar 5, 2018

Hi! I am creating this post for my mom. About every 3 hours she loses movement from her neck down for 45 minutes to an hour. She hasnt been able to walk for almost 2 months now. She is only 54 years old and living in a wheelchair in a nursing home. Has anyone ever experienced this before? We have been denied by Mayo Clinic..after being refered by our Neurologist.. which is so frustrating. We don't even know where to turn now. How is she supposed to live her life like this?!

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Gary, Alumni Mentor | @gman007 | Mar 12, 2018
In reply to @hopeful33250 "Hello @folkert I appreciate your telling @amber3212 about the Periodic Paralysis Association and the Facebook support..." + (show)
@hopeful33250

Hello @folkert

I appreciate your telling @amber3212 about the Periodic Paralysis Association and the Facebook support groups. That could be very helpful to her in her investigations!

Also, as I see this is your first post, I would like to welcome you to Connect. If I may ask, what brought you to this website and this Discussion? If you are comfortable sharing more information: have you or a family member also been troubled with periodic paralysis? If so, I would be interested in hearing your story. One of the values of Connect Community is that we all learn from each other.

Once again, thank you for adding valuable information to this discussion. I hope to read more of your posts and I look forward to getting to know you better.

Teresa

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@folkert I would like to add my welcome to Teresa's and hope you will tell us more about this problem as you are able and willing. It certainly sounds like something that would be a great learning experience for most of us and I hope that you may find more people here who could possibly add to your learning. Welcome, Gary

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 24, 2018
In reply to @folkert "My first symptoms were very minor, as in problems with handwriting after writing 1 or 2..." + (show)
@folkert

My first symptoms were very minor, as in problems with handwriting after writing 1 or 2 pages and sometimes some unexplainable falls due to muscle weakness.

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Hello @folkert

I was noticing your posts about Periodic Paralysis and I was just wondering how you are feeling these days? I would enjoy hearing how you are doing.

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1 reply
Folkert Veenstra | @folkert | Sep 26, 2018
In reply to @hopeful33250 "Hello @folkert I was noticing your posts about Periodic Paralysis and I was just wondering how..." + (show)
@hopeful33250

Hello @folkert

I was noticing your posts about Periodic Paralysis and I was just wondering how you are feeling these days? I would enjoy hearing how you are doing.

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Hello Teresa,

It goes really up and down. Without the medicine Keveyis (dichlorphenamide) I get very unstable and it is not a condition wherefor you can go to each hospital either. I know from many others their experiences that Mayo Clinics are for example not specialised enough to treat this condition.

In the USA there are for example specialists in Dallas, TX, Rochester, NY, Boston, MA and Baltimore, MD. The problem is if you don’t go to one of the top specialists, that it gets easy misdiagnosed.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 26, 2018

@folkert I understand what you are saying. I have a rare form of cancer, neuroendocrine tumors, and not all doctors can diagnose it and/or treat it correctly and that is true of general oncologists. The number of specialists in the area of NETs is increasing world-wide which is a good thing. I would hope that the number of specialists who treat Periodic Paralysis Association will increase as well. Do you see a neuromuscular specialist at Mayo? What is your worst symptom with this disorder?

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bumble81 | @bumble81 | Jul 6, 2020

<p>So this happened. Been put through the ringer, diagnosed with random stuff only to find out what I actually have is Hypokalemic periodic paralysis.<br />I think my first major attack was in 2015. Just reaching out to others with the condition.</p><p>Im not even sure this is the right place for this post.</p>

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 6, 2020
In reply to @bumble81 "So this happened. Been put through the ringer, diagnosed with random stuff only to find out..." + (show)
@bumble81

<p>So this happened. Been put through the ringer, diagnosed with random stuff only to find out what I actually have is Hypokalemic periodic paralysis.<br />I think my first major attack was in 2015. Just reaching out to others with the condition.</p><p>Im not even sure this is the right place for this post.</p>

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@bumble81, you have been through the ringer. I moved your message to this existing discussion about hypokalemic periodic paralysis so you can connect with @folkert and @amber3212. Here is another related discussion too:
- Chronic Fatigue Syndrome and Temporary Paralysis? https://connect.mayoclinic.org/discussion/chronic-fatigue-syndrome-and-temporary-paralysis/

Bumble, Have you done any genetic testing to confirm the diagnosis? How often do you experience episodes? What treatment options are being recommended for you?

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