I finally got it, I could jump up and down with excitement, if only I wouldn't fall over when I landed

Not for my MS though, that was diagnosed two years ago.

But yesterday I got a diagnosis of HypoKalemic Periodic Paralysis. I have attacks of full body paralysis, even facial muscles, muscles that affect swallowing, and muscles that assist in breathing. I have had these for six years now and just finally got the diagnosis yesterday! But I was put on a medicine for it in February and have not had a full attack since.

We now now that I have hypoglycemic issues, but it fluctuates drastically so I have to really watch my diet. But that also goes along with controlling the paralytic attacks.

So now hopefully with watching my diet, carefully planning my activities, and taking all of my medicines I can get at least that disease under control!

So now I've got MS, POTS, and HypoKPP. Oh and my doctor brought up that I might have MENS with what my blood sugars are doing. Really, three things aren't enough, I need to have another! Oh well I'm too happy about finally being diagnosed and treated (not told it's all in your head) to be bummed about anything!!!

I hope everyone else is having a great day!!!

Kristie

I'm sorry you have anything but I'm sure it feels better to have what you go through validated, not to be told "it's all in your head.

I hear you Kristie and Congrats...I think..

Yeah I know, it sucks to be sick. But at least with a diagnosis we are able to start doing something about it and I'm FINALLY starting to get some relief from these paralytic attacks. They make it very difficult to take care of the house and kids.

Thanks.

that's a lot to deal with at one time.
i'm glad that's it all is coming under control.

Hi Kristie,
Sorry to hear that you are collecting more Dx's, but better to know, than not to know, right? I hope the medication works for you.

Are these both inherited disorders? Like in your DNA? Does anyone else in the family have these disorders? Just curious. You don't have to answer these questions. I just thought they were passed down dx's.

Let us know how the medications are working. I hope they stop your problems.

What is POTS? Is that where you get dizzy from posture movements? I also learn something everyday on here. I find it interesting, what can I say?
Feel better

Hi Lady,

Yes it is better to know, I really am very relieved to finally get a doctor to say on paper that I truly have Periodic Paralysis. It is very hard to go to several different doctors and after thousands of dollars and several years they just look at you and say I can't find any physical proof of what this is so it must be all in your head. And yes the medicine is helping a lot, I just have to get diet and activity under control now. So when I over do it, not only does my MS give me problems, but I have more paralytic attacks, but I really think the Periodic Paralysis was my first disease that showed up, it just took longer to diagnose.

Periodic Paralysis is generally an inherited disease, but it some cases (like me) the person is the first in the family to have it. Aww I'm so special,

MENS I'm not sure about, I haven't done enough research on it yet and really don't know anything about it except that the M is Multiple E is endocrine and S is syndrome. I can't remember the N right now.

POTS is Postural Orthostatic Tachycardia Syndrome. So when I stand (when not on my meds for it) my heart rate goes up to 170 just standing still. The symptoms I feel of that one when it gets really bad, is shortness of breath, intense pressure in my face and easily exhausted.

My Mom has Addison's Disease, Hypothyroidism, Diabetes (all three endocrine problems) and Granuloma Anular. My family tends to show up with all the off the wall diseases, and I have a huge family so I have no idea what everyone else has. I have 15 Aunts and Uncles on my Mom's side, not counting their spouses.

I really don't have any problem answering any questions about this. I have always been open with everyone I know about what's going on. I live in a small town and people can tell when somethings wrong. It seems like every time I see someone I haven't seen in a while they want the newest update. But I know they are just concerned and want to see this all get figured out.

If I missed any of the questions you asked I'm sorry, my eyes are really bothering me right now.

Have a great night.

Kristie

Hi Kristie!

Glad to hear you finally have a definite diagnosis but sorry you have to deal with so much. We all sure understand the "all in your head" thing while we were waiting for our MS diagnosis. What actually happens when you have one of the paralitic (sp?) incidents? Is it like having a total body spasm when everything freezes up and you can't move until it passes by?

Take care and keep your positive attitude!!

Hi Judy,

Yes it is a full body paralysis, including my face. It becomes difficult to breath and in some of them swallowing is impossible. I have not had one where I am only paralyzed in one limb, but it is possible that I could have those kind of attacks. It was very scary the first time I had one. I can hear everything going on around me and I can feel everything, I just can't respond to it.

They last anywhere from 20 minutes to and hour on average, but I have had one that lasted 16 hours after IV SoluMedrol. For the next five days after that I was in and out of them several times a day while I was in the hospital.

No reason to be down about it, the only thing that will do is make things worse. I'm going to enjoy my life and my kids' youth no matter what I have to live with.

Have a great day.

Kristie

Hi Kristie,
Thank you for the information on your dx's and the explanations too. You have a great attitude, very positive. That is half the battle with any disease. Don't ever let it get the better of you, this way you win, it doesn't.

I feel the same way. I have to find enjoyment in everyday, despite whatever else I am feeling.

Thank you for sharing. I hope we hear more from you. Take care.