Hypokalemic Periodic Paralysis
 

Yes, this is Abby doubting her diagnosis again...:confused: Because I'm seronegative, and because one doctor couldn't find evidence on the SFEMG, and because I have no eye symptoms. And becaus mestinon doesn't seem to help me at all.

What brought these doubts on is that yesterday I had an episode of intense weakness. I fell twice (the "slow collapse" kind of fall, where my legs just don't hold me up). These episodes come on me quite suddenly and intensely, and they don't seem to be related to my level of activity. I have general weakness through the day, too, and muscle fatiguablitiy. But these episodes, which I've had before, come over me all at once. I can feel the strength draining from my body.

So: how about HKPP! AnnieB6 mentioned this to me once, I think, a while ago. HKPP http://www.hkpp.org/faq/hypokalemic_...paralysis.html comes as attacks, but there are also "abortive attacks" which causes fluctuating daily weakness.

So, how am I supposed to tell MG and HKPP apart? I did have a response to my IVIG treatment--but perhaps that was a coincidence. I had only a week and a half of strength, about two weeks after the IVIG ended.

Abby

I have HypoKPP and MG was something I was tested for on the way to my diagnosis.

Diagnosis for this is extremely difficult. Do carbs or rest after activity seem to trigger attacks?

I'm sorry, I know there was something else I wanted to say to you but I can't remember what it was.

You could see if your doctor is willing to try you on meds for HypoKPP to see if they help.

I often get really weak all at once around 5:00. It's typical for me to be feeling somewhat weak but be functioning, to sit down to dinner, and then to have trouble walking when I leave the table. So, that would sound like a carb reaction and/or a rest after activity reaction--but then I notice it happens at the same time if we haven't eaten yet.

I almost never wake up weak, though.

If you think of anything else, let me know! Thanks for your response.

Abby

Evenings tend to be worst for me. I find that I have been having attacks in the middle of the night while I'm still sleeping. My husband notices a difference in my breathing, that's how we know they happen.

Salt also tends to be a trigger, and so does heat!

Darn it, again I had more to say but can't remember!

I'll let you know when I think of it!
Kristie

Hey, Abby, AnnieB6 here. ;)

http://neuromuscular.wustl.edu/mtime/mepisodic.html

Since you have a very good endocrinologist, why don't you have her put in standing lab orders for a comprehensive chem panel to be done for when you are having these "attacks?" You not only need to see what is going on with your potassium but other electrolytes, glucose, protein, kidney function, etc. Often what doctors can do is put standing orders at a hospital lab, so you can go in anytime of night or day.

A drop in glucose can cause weakness too. Do you have any signs of "reactive hypoglycemia?"

Annie

Aniie,

Oops. I have trouble with numbers, but I never forget a name.

I see my endo Tuesday for a Graves check-up. I'll ask him! Thanks. I'm not sure if I can catch an episode, though, because they often pass pretty quickly...and in the middle of one, getting to the lab is going to be an adventure! But it seems like the thing to do.

I think I know how reactive hypoglycemia feels to me. I used to get sick and shaky mid-morning if I ate only carbs and no protein for breakfast. These episodes feel a lot different--they're an intensification of my usualy myasthenic symptoms, which means trouble holding my body upright, and sometimes my legs don't hold me up either, and I collapse.

Abby

You know what, I'm starting to feel silly for even thinking about this. First of all, I have seven grown siblings--none of them have any weird symptoms. This is a dominant gene. Even if I'm a new mutation, which I've read happens "occasionally," I have seven kids of my own--five of them old enough to show symptoms if they inherited it. And third, I started to get these symptoms when I was 43, which is way too late--almost unheard of.

I will journal the attacks, because maybe there is a trigger, no matter what sort of attacks they are. But I think for now I have to assume it's MG. I'm putting a lot of trust in the occular MG specialist who diagnosed me by SFEMG. Onward and upward. Thanks, Annie and Kristie, for your help, and Kristie, I would still be very interested in anything else you think of!

Abby

I think a journal is an excellent idea!

Include what you eat at each meal too...there may be a trigger in your food.

Also if you could devote 2-5 days to this it was helpful to my doctor. Journal everything you eat or drink, every symptom you have and if you can get a glucose monitor. Check you blood sugar before eating, immediately after, 30 minutes after, 1 hour after and 2 hours after. It is very time consuming to do this, but it was a big help in my diagnosis.

I have an abnormal case. I am the only one in my family with it. My attacks come as full body paralysis including facial muscles and breathing becomes difficult.

I guess I'll just keep trying to tell you what I remember, hopefully I will be able to remember by the time I am typing next time.:winky:

How old were you when you started to get symptoms? And do you experience symptoms in between attacks?

Abby

I was 19 and pregnant the first time I had an attack. I really couldn't tell you if my symptoms between attacks are from the periodic paralysis or MS or POTS. It's hard to separate what's what.

http://neuromuscular.wustl.edu/mtime...odic.html#ttox

http://neuromuscular.wustl.edu/msys/mend.htm#thyroid

There are so many different types of causes for episodic weakness.

Don't only watch for reactions within an hour of eating but hours later, after food reaches the large intestines. You can have delayed reactions with foods in the nightshade family, for example.

If you can, take your blood pressure/pulse while these episodes are happening too, if you have a BP cuff. I like the wrist ones, Omron brand specifically.

Abby, It may not be "only" a blood glucose issue but it could be that triggering a chemical reaction in the body. The sodium or potassium or calcium/fluid shifting that goes on could be what is going on too.

Do you use Benadryl (shifts fluid)? Any meds with Mannitol in them (which can play with fluid, particularly in the brain)? Take a good look at all of your meds. It sounds like this was happening before you took meds though but some might make it worse.

Shooting in the dark here. Just wanted to give you more ideas.

Annie

Well, the truth is I'm on HCTZ (as a diuretic to prevent migraines), which I know depletes potassium. In fact, it's used as a treatment for hyPERkalemic periodic paralysis. I have a lab slip to get my potassium levels checked. I'm going to do that any day now. Yes, I am! Tomorrow, even.

I was aware of the hyperthyroid kind of periodic paralysis. I know I'm not hyperthyroid--I get my levels checked every three months, as per my endo's insistence, because I'm a non-compliant patient and stop taking my PTU (thyroid suppressant) when I feel I don't need it any more, because I am terrified of going hypo (I have it in my head that it would put me into a deep depression). I'm getting tested again next week. Anyway, my thyroid levels have been terrific for over a year now.

Anyway, I take Imuran, Mestinon, and HCTZ. Other than that, just a multivitamin with iron (Flintstones!) and occasionally ibuprofen.

Thanks for the tip about journaling. I will pay attention to food I eat even if the episode doesn't occur immediately afterwards.

Right now, my biggest trigger seems to be hormonal shifts at the end of each cycle (dropping progesterone, I guess). Four days before a new cycle starts, I can count on ending up on the floor. This same hormonal shift used to give me horrible migraines, presumably because of water retention (that's why I take HCTZ--works beautifully).

Abby

That's one of the first triggers my husband was able to pinpoint in me. I have about a week before my cycle starts that I have all kinds of attacks! We have begged the doctors to look into this being related, but they all seem to think it's in our heads!

Well, when a doctor says there is no relationship, they are simply not as informed as they could be. The body is one giant biochem factory and fluids/electrolytes are essential to many functions in the body.

Here are only a few sites. Go ahead and Google "women's cycle electrolytes" and see what you find. Then you can show your doctors this info, if they won't be utterly offended by it. ;)

www.ijpsr.info/docs/IJPSR10-01-10-04.pdf

http://www.ncbi.nlm.nih.gov/pubmed/7431318

Abby, I think I have something similar going on. I also have some of these slow falling times without any obvious cause. It is happening less often recently which is good. For me, I think it is a delayed reaction to activity, but there is no consistant time between activity and weakness. I also have this slow falling as a reaction to stress, and in that case it happens quickly, within minutes.

Seperately from that, I am noticing the effects of certain foods, so many I can't name them all.

Eating sugar has the most obvious effect, and I have been avoiding sugar most of the time...but when I do eat it I often feel my heart beating in my chest, and sometimes I feel dizzy and nervous, too...and then I crash with exhaustion.

I also get bumps in the back of my throat from sugar (and a big list of foods), this is nothing new, I've had this reaction most of my life, an allergic reaction.

I also get the same reaction, minus the bumps in my throat, from taking Mestinon in any bigger doses that 1/8th of a pill.

I noticed that the heart and nervous reaction to Mestinon and food began after I started taking Mestinon. I am pretty sure there is something bigger going on.

One of these days I'll go to the doctor about this issue, but currently I am overwhelmed with too much to even think about it.

I hope that makes sense...I don't feel like I can express myself properly today.

Abby, I wanted to make a comment about the Flintstones. I was taking a chewable multivitamin and realized it was triggering my MG and allergies, too. I noticed a similar ingredient with a few other food triggers such as chewing gum(which I rarely chew because it makes me so tired :p
)...Aspartame!

Check for aspartame on the Flintstones.

After I started suspecting Aspartame, I did an internet search and I don't like what I found. I am not sure how much of this information is true, but still I suspect aspartame is not good for anyone, let alone someone with MG.

To see for yourself, do a search for "Aspartame myasthenia gravis".

I haven't read anything that makes me feel safe eating Aspartame yet, and I don't need it anyway, so I am avoiding it.

I hope this is helpful.

http://lsned.com/facts/aspartame-fda/

http://autoimmunediseasesymptoms.com...on-and-disease

http://www.ncbi.nlm.nih.gov/pubmed/18850355

If it goes toxic/breaks down in temps above 85 degrees . . . well, our bodies are above 85 degrees. Haven't had this junk for decades.

Annie

Wow, thanks. I'll look into it. I never drink diet soda or use artificial sweeteners--except for the vitamins, which I take at supper time, which is typically when the weakness hits. That's a really good lead!

Abby