Need Understanding Of What Is Going On With Me

[pearsjon]

my last er visit was horrible i won't go into all the gory details, as it is not good for me to get that upset.

i wanted to know if anyone has gone in with paralysis below the knees. swelling from knee down.

they could get not get reflexes from knee down. reflex at knee but that was it.

they did orthostatic bp's sorta of. they took bp as soon as i stood up, and only once. i thought with the dx that they would take it for up to three mins. am i wrong?

it seems when this happens to me my hr and bp are fairly ok, meaning they are alose together. like lets say 111/99.

when i went in it was 142/93 with a resting hr of 100. high for me. as i am always low like barely reach above 90/60and hr is usually around 60-70. of course i was told that was normal.

the more they messed with me the lower bp went. normal also.

it was suggested i was bi-polar. lol.

iam always worried they are missing something when it comes to my legs. my calf muscles get extremely large , as if i am a body builder.not.

i smoke, so that doesnt help. it was also suggested that it could be from my period , i ahve had hystretomy.

i am a little concerned that they r not dealing with my legs..

i do not get upset about it just worried. how can nothing be wrong and yet i have no reflexes?

my dx from them( and yes they knew about all my pots,oi,ncs stuff) chronic,intermittant bilateral lower extremity weakness.

even though PA was stating left sided weakness. i recieved no other info from er doc just sent me home like i was a crazy person.

i am really worried about this leg thing as it is coming on again. i told er doc it was an average of once a month,he was like so maybe every 28 days, i said no, on average once amonth. so have any of u ever gotten swelling and paralysis at the times of your period? kinda of trying to figure his reason on this. i couldn;t think clearly enough then to think of thta question.

and have i ever seen i psych. was a question. or maybe i was stressed.

this is wwhere my dys specialist is at, and the er he told me to go to for that reason.

i am so confused. should i step out of the bounds and go to uab or mayo?

[pat57]

your should search chronic intermittent bilateral lower extremity weakness

or hypokalemic periodic paralysis

there's quite at bit on the web.

for instance.....

Thyrotoxic hypokalemic periodic paralysis in two Caucasian females

Cristina Preda, Letitia Leustean, Carmen Vulpoi, Cristina Cristea, Christina Ungureanu & Eusebie Zbranca

University of Medecine ?Gr.T.Popa?, Iasi, Romania.

Hypokalemic periodic paralysis is an uncommon complication of thyrotoxicosis especially in Caucasian women. It is most frequent in east asian and Japanese males and is characterized by recurrent episodes of motor weekness of variable intensity associated with hyperthyroidism. It is usually associated with low plasma potassium levels and is often precipitated by physical activity. This condition is a self limiting disorder that is cured by the treatment of the underlying hyperthyroidism. We report two cases of acute onset weakness followed by paraplegia from periodic paralysis in two Caucasian female patients aged 69, 51 respectively. Both patients presented hypokalemia and thyroid function tests showed hyperthyroidism. Oral potassium and antithyroid drugs (thiocarbamides) resulted in disappearance of symptoms. Thyrotoxic hypokalemic periodic paralysis is often under-recognized. This cases shows that thyrotoxic hypokalemic periodic paralysis is not confined only to east-asian males but also to Caucasian females. The treatment with antithyroid drugs and oral potassium given as soon is possible is successful.

[ajw4790]

Hi!

I am sorry you had such a rough time! I am not sure that I understood everything that you were saying... But, you went to the ER b/c you couldn't move your legs? And there was swelling? Was it on the right and left?

For the reflexes you said that they got your patellar (knee) reflex, but not lower? That is not abnormal, the achilles reflex is hard to get sometimes, even on normal healthy individuals. So, I really would not worry about your reflexes they sound from what you said fine. We are taught in our program to perform and assess reflexes, so from what you said they sound fine.

I am not sure about the three minutes upon standing. That would give your system more time to recover, which for many of us would mean that it would even out.

Your BP and HR were a little bit high, but could have been due to the stress of being in the ER and whatever was going on. It was not necessarily anything wrong. Again, I think "healthy" people may have the same reaction in that situation, due to the whole white coat syndrome etc. (Where even if you are not nervous etc. around drs. your body naturally is somewhat anxious around drs. and medical situations.)

I think the important thing is to take a deep breath and try to destress a little bit. You sound overwhelmed. This could raise your BP etc. and make you feel worse. Maybe see if trying to relax etc. will alleviate some symptoms. Then, this way if you continue to have symptoms with your legs etc. You can go to your dr. and say that you have had these symptoms for so long, and you have tried this, this, and this type of thing so then they can rule out stress etc as a cause.

Doesn't paralysis sometimes come on with migraines? Do you get migraines?

None of this is to say that you don't have a ton going on, but sometimes I have to remind myself to try not and worry so much etc. All of what you went through seems awful, and I hope you get some answers! I hope someone listens to you!

Hope you get to feeling better!!!

[pearsjon]

ajw,

this has been happening to me for oaver 10yrs (paralysis and swelling). i don;t have white caot syndrome cuz i do stand up for myself. if the doc had looked at previous records he would have seen that i am always low bp ( which is why i have suffered w/o dx for so long).

they did not get a babinski or non babinski sign. which they should have gotten a response there, either up or down. and they got nothing. the PA saw weakness of whole left side ,just not as severe as the legs. when this is not going on i have "normal" reflexes in feet and achillies.

the paralysis and swelling were bilateral, meaning both legs equally.

yes went b/c i couldn't move legs, and also end up wit abnormal gait even though they never write that down. if the doc is dragging me, then apparently i can not move my legs. i think the only reaspn i can stand is that my thighs muscle are still strong enough to keep me up. cuz i can feel the strain on them. and because i knew my bp and hr were up i could feel it.

my dx is orthastic hypotension, so for me to runf that high it's not right. stress is not something i can't handle, i think i do pretty well, anyonewho knows me would say that.

this had been going on for 5 days before i went to er, so i was resting for that long before i went in. so increased activity and stress do not make sense.

when this happens i can not move anything below my knees( and sometimes they r difficut). icouldn;t move my ankles raising or lowereing and same with toes. i can't make toes srpead apart, lift them up nothing.

i just can't figure out how swelling and paralysis in any part of the body is normal, especially when i am having so much trouble finding someone else it's happening to.

btw, i am no more bipolar than the man in the moon. if u knew me u would understand. i raised 2 children w/ no chid support and no husband for 10yrs and i started at age 16. so i think i would know if stress was causing it.

ioften wonder that if i was so stressed to cause this why would it not happen everytime i go to the doctor. in other words if i caused this to myself, wouldn;t i find it a little easier to get help while at pcp office and just make it happen then.

every doc that has seen it(other than er docs) tell me to go to research hospital they have never seen anything like it. they tend to freak a little.

anyways thanks for the help, when it does happen again and it will i am just going to go sit in my dysautonomia specialist office till he sees me. then he might know if it is dys realated or not, and go from there.

and yes, i have occular migranes, but not at the time this was going on.

i am prescribed 3 xanax aday to help with heavy adrenaline prob.

i was on 2 at the time. ishould have been a mellow cow.

pat,

i have done a little research under that hypokalemic and i will do some more. u know with this dys stuff i have to read everything 2-3 times before i quit merging altogether in my head. i am also going to talk to him about dystonia tht dguest ,brought up to me a while back.

thanks again for your help.

[pat57]

among the possibilities I found -on the web are;

compression of nerves- tumor

trauma to nerves from, fracture, injury , surgery, diabetes

low potassium

thyroid problems

[pearsjon]

thanks pat, i did look up the periodic paralysis and the others. i do see alot of similarities in what i've going on. i am going to talk to doc about it when i see him next.

[pat57]

oh good. Hope you get a dx. Sounds scary to me!

[stellakitty]

Firewoman...

I have the same problem with the not being able to move my leg below the knee on my right foot... I cannot move my ankle, or my toes, PERIOD... Unless I am in cervical traction. This for me is constant... I have NO feeling in my extremities (unless it's the nerve pain, of course... but I can't feel external pain sources). I've been diagnosed in my right foot with significant "drop foot"... I have an AFO brace that I wear several times a day in order to prevent an incapsulated calf muscle (since it doesn't get "used) and muscle "shrinkage".

My central neurological symptoms are not stemming from the Dysautnomia... I have Chiari malformation (decompressed June 2006) and because I have severe EDS post op my head has sunk BIG TIME (cranio cervical instability/cranio settling). I am awaitng a Cranio Cervical Fusion to stop the progression and hopefully make me somewhat better... Have you had an MRI of your head/neck and sent it to a doctor who specializes in chiari and related diseases? If you PM I will give you the info of the nsg I am currently seeing... He is VERY straightforaward and will look at your MRIs without you having to go up there... If he feels that a visit is warranted his office will call and schedule you for a consult. There is a possiblity that CM and CCI and EDS AREN"T causing your issues but at this point in the game it's a good idea to rule EVERYTHING out!!

I was diagnosed with dysaut. when I was 14 and wasn't dxed with CM until 3 years later... I had to ask for the testing for CM. And this was after I had gone from being able to spend 6 hours at the amusment park, to being w/c ridden, to practically bed ridden... After I was decompressed I felt really good for about 3 monthes and then I got sick again in Oct. 2006 really fast due to the head falling... Now I wear a cervical collar full time... I can't sit up due to the pain and dizziness it causes. If I do go out it is typically only for doctor's appointments, and I have to come home and sleep.

I told you my story not to make this post all about ME, but to let you what happened... CM snuck up on me. I just think it might be worth your time to check out because in my experience it HAS caused me to not be able to "use" my legs, my bp gets EXTREMELY high (about 250/140 with hrs above 200 at rest). Feel free to PM me...

Alexa