Very interesting Alabama. It IS all a mystery. In April of this yr., I had an awful AD crisis. They're all bad, but this time I had add'l/new symptoms, most of which I will spare you. I had to pull myself to the ph., with my arms, to call 911. My R-leg was literally 'dead', couldn't walk. I could feel sensations, but could not move it & had no control over it. If I had not been in so much unbearable back pain, I would have been seriously worried.

When I arrived at ER, my dead R-leg was what the triage RN was most concerned with, even though my BP was 81/52 & I was throwing up blood (sorry). I was given the usual IVs, including morephine. For some odd reason, immediately after the morephine, I was able to control my leg, stand & even take a step, but still had leg weakness. However, my R-foot remained turned inward. The MD called in a Neurologist, who immediately called for a Neurosurgeon. The Neurosurgeon was dumbfounded and simply said, "Let's just watch it". The Neurologist gave a strong fight and did say the morephine acted as an anti-inflammatory, to my spinal nerves, but her argument was lost...UGGHH!

I'm not sure & don't know if a muscle issue (by itself), could cause 'dead leg', without the spinal nerves somehow being involved. I still don't know the physiology of what exactly happened, but I assumed my lumbar spine was compressing the nerves which control my R leg, all having to do with AD. I guess if there is significant nerve inflammation, then the muscles are unable to respond? My other thought was that it had to due with failure, or misfiring of brain signals, to the leg...from pit'y and/or hypothalmus, to kidneys, to spine, on & on. This disease does not spare us from ANYTHING! I have to re-read the article & try to put it together. FYI-My foot & leg are perfectly OK now, asde from pain?!?
PS - I was hypokalemic, at the time.

I, as usual, forgot to add House had a show with an AD patient. House & his collegues were perplexed, b/c of the numerous symptoms. The pt. was depicted as being quite ill, they ran every imaginable test, but the pt. was not nearly as bad, as we know it can be. House's cure - HC!

You have had and continue to have way more than your share of trouble with this disease. What an awful episode and how terribly frightening!!! Had the IV fluids been flowing long enough to make an impact on being able to control your leg? Just thinking about that other patient's glucose pills that helped him vs your IV fluids. I'm guessing not enough had gone in before the morphine did the trick.

Was the triage nurse concerned with you having a blood clot? That's some pretty scary bp.

The fact that you were hypokalemic blows the theory of having the same thing this man did.

Was the episode on House a recent one? I've seen a couple that mentioned AD in the course of the docs ruling out stuff. Both were a couple of years ago. Did you see the episode of Royal Pains in which one of the players was diagnosed with AD? It was a pretty lame depiction...nothing like what we all went through before being diagnosed.

Yeah, it was scary, but the pain was my 'saving grace', in an odd way. It distracted me from knowing what could be.

Your questions are pretty sharp!! I was immediately given IV saline, no glucose, upon EMS' arrival, at my home. They then called the Hosp's ER MD, for an OK on Morphine, which was administered in ambulance. Once in ER & after bloods were taken, my glucose was normal, so no IV (or oral) glucose. Even though they had my Emer'y AD Card & I tried to explain the AD thing & begged for ANY Endo, I was ignored.

I was admitted to the stroke unit. Now, that REALLY frightened me, as I had a clearer mind to process things, b/c of reduced back pain & no more dead leg. It also frightened the RNs, by the looks of me! I ended up having to comfort & reassure them...they knew NOTHING abt AD! After many, many tests, no clots, occlusions, but they may have missed something, as they usually do and as WE are unique (atypical :)

After rec'g enough saline, potassium & HC, my BP increased to 98/60, but it took abt 20 hrs. I did remain on morphine for 10 days, which I did not feel I needed...hmmm.

So, Dr. Alabama House(!), even though I did receive saline, prior to morphine, you may very well be correct in that the saline was not sufficient in strength, or time wise? I was severly dehydrated. Or, maybe I did need glucose, regardless of my levels? I know if that EVER happens to me again, I hope I just croak.

The House eisode was aired last yr. I know when House & his team do their rule-out thing, AD is frequently considered. In this particular episode, AD was ruled IN.

Thanks for your interest!

lunar ~ that entire episode you went through sounds awful. i can't even imagine! i would have been terrified upon realizing that a) they were not sending an endo (which is borderline, if not complete malpractice, imo) and b) the nurses in the stroke unit weren't familiar w/AD. did they at least send you an endo then? good grief!

alabama ~ you are one sharp cookie!

for what it's worth, my crisis' almost ALWAYS start w/me being dehydrated. i say almost to be safe, but i'm not sure that there has ever been a time that i went to the ER for one when i wasn't in desperate need of saline ... is this pretty standard w/everyone? now i'm curious ...

xo, misa

Thanks, Misa and Lunar! I used to think I was a pretty good advocate for myself and pretty good at dishing out advice to friends with minor health issues. However, after reading posts from the two of you, Cokecpl, and Vanyel, I realize just how in the dark I am. In a way, that might be a good thing...I haven't experienced the trouble y'all have, so many of these things I just haven't investigated. I study on a need to know basis. My poor little brain can't comprehend or retain very much as it is. I'm glad I went to school when I did...I'd never make it now.

I patted myself on the back for days after making a spreadsheet with all of my test results in order from oldest to most recent. I was pretty impressed that I could show it to my docs and they wouldn't have to look through a six inch thick file to compare test results. They weren't nearly as impressed as I was. But, at least now I can see just how long certain things have been out of whack and ask the right questions...kinda.

i didn't know that you lived in the UK, jen - how absolutely cool!

where abouts? just curious. i love all the history and beauty there
is there ... definitely kicks our butts sometimes.

xo, misa