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amber3212
@amber3212

Posts: 7
Joined: Mar 05, 2018

Periodic Paralysis or Hypokalemic Periodic Paralysis?

Posted by @amber3212, Mon, Mar 5 11:54am

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?!

REPLY

Hi Amber,
I'm so sorry to hear about your mom. I can't imagine this happening every 3 hours. Do she have low potassium levels, which leads you to think this may be hypokalemic periodic paralysis? I don't know much about PPP, but have read that triggers like exercise, medicine, or certain foods can set off the attacks. Have you noticed patterns or triggers to your mom's attacks or changes to diet, activities and/or medicines that help prevent them or lessen the frequency?

@colleenyoung

Hi Amber,
I'm so sorry to hear about your mom. I can't imagine this happening every 3 hours. Do she have low potassium levels, which leads you to think this may be hypokalemic periodic paralysis? I don't know much about PPP, but have read that triggers like exercise, medicine, or certain foods can set off the attacks. Have you noticed patterns or triggers to your mom's attacks or changes to diet, activities and/or medicines that help prevent them or lessen the frequency?

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Thank you so much for replying. We are trying to figure out what triggers everything. Currently trying to find a new primary doctor now, since Mayo Clinic denied us. Her "episodes" or attacks were acting in a pattern but now they are coming more sporadic. She's never had her levels checked and I've heard the best time to do it is during the attack..but to find someone to follow through with it has been so hard. So many have diagnosed her with Conversion Disorder and then send her on her way. She has every single symptom of low potassium or Hypokpp.
Now ever since she's been diagnosed with Converison Disorder, no doctors seem to want to help or have anything to do with her. Pretty sure they would have other opinions if it was their loved one going through all of this. 🙁

Dear Amber, I would suggest to get in touch with the Periodic Paralysis Association and ask their experts for advice where to go. There are plenty Facebook support groups for patients with primary periodic paralysis.

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

I have got hypokalemic periodic paralysis myself, because of that I read a lot about muscle channelopathies and I share my knowledge through Facebook groups together with other people with periodic paralysis.

@folkert and @amber3212

Here is a link to a website for the Periodic Paralysis organization, https://www.periodicparalysis.org/site/diseases-diagnosis-and-management/.

If I may ask, @folkert, how long did you have this disorder before it was diagnosed and what treatment or change in lifestyle was most helpful to you?

Once again, thank you for your participation in this discussion. You are offering a lot of learning and help to our Members. I look forward to hearing from you again.

Teresa

@folkert

I noticed that there are several FB pages devoted to Periodic Paralysis. Would you care to share which one is yours?

Teresa

The whole process of getting a diagnosis after my first symptoms took more as 30 years. It is important to see the right neurologists. You might be at one of the best hospitals, but that won’t mean anything when you don’t see that neuromuscular neurologist with a special interest in Periodic Paralysis.

I am for example active member of the following Facebook groups: Hypokalemic Periodic Paralysis Network, Periodic Paralysis Network Support Group, Periodic Paralysis NUT-works and there are quite a few other ones. Each group is slightly different.

@folkert

The whole process of getting a diagnosis after my first symptoms took more as 30 years. It is important to see the right neurologists. You might be at one of the best hospitals, but that won’t mean anything when you don’t see that neuromuscular neurologist with a special interest in Periodic Paralysis.

I am for example active member of the following Facebook groups: Hypokalemic Periodic Paralysis Network, Periodic Paralysis Network Support Group, Periodic Paralysis NUT-works and there are quite a few other ones. Each group is slightly different.

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@folkert

I do appreciate all of the good information. If I may ask another question: what were your first symptoms?

Teresa

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.

@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

@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.

@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.

@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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