Victoria

I had to check out for a while, but it is very reassuring to read I'm not the only one with this problem. I'm miserable today, but in the opposite way. Temps dipped down in the low 50s with high winds and now my veins are hiding from me. My hands, feet, rear end, toes and nose are freezing cold and numb. I find it hard to move or hold on to things and have sensory loss when I get this cold, but it's especially bad right after a rapid and large change in temps. It sure is nice to be able to connect the dots. Libby, I'm sorry you had to hide your feet during your interview. You try to make a good impression and your feet won't let you. Ugh! If it's any consolation I'm a chalky death-like white today from the cold. We sure can't win, can we? Thanks!

I had the spinal tap because I had meningitis, then a blood patch because my migraine would not resolve. I developed cardiac arrhythmias and was placed in the cardiac unit, but no ANS testing. Darn. I find the spinal cord interesting as it pertains to symptoms.

Has anyone who has had both high and normal cortisol considered Cyclic Cushing's syndrome as a cause? It's a rare disorder characterized by repeated episodes of cortisol excess interspersed by periods of normal cortisol. I'm discouraged because I can't talk my endo into testing me.

We jumped from winter to summer weather here almost overnight. The heat and humidity have me feeling totally miserable — not good. I'm trying to keep hydrated with Powerade Zero and salt loading. The veins on the back of my hands and on top of my feet get very prominent; my fingers and hands swell and ache like crazy when it gets hot and humid outside. The pain in my veins is unbearable when I accidently whack the back of my hands or drop something on the tops of my feet. Can this have anything to do with dysautonomia, or is it just quirky old me?

Good advice, and thanks for posting. I tried to get my GI doc to stain for mast cells during my endoscopy, but he said he couldn't do it. I do have some unusual comments (more like the GI docs are questioning their findings) in all of my biopsy reports. I can't lay my hands on them right now. I have some quirky skin rashes that flare up here and there. Jared, I looked at your photos and my rashes also look pretty innocuous. My question is: over time can the rash turn into brownish spots that look like freckles? I've been told mine are freckles (no biopsies), but people don't develop freckles in adulthood, do they? I was truly freckle faced as a kid but they've disappeared with age. I'm confused.

Dear Naomi, I feel your pain and frustration. Don't ever give up and accept that you'll feel this way the rest of your life. You might want to take a little break to regroup and try to get your head above water. One can almost drown in the sea of information, but you'll find your way because you are strong. Your strength is palpable through your writings.

Lyn, My symptoms spell endocrine dysfunction but no one will treat me. I am in the midwest; Iowa to be precise. I have had recurrences of candidiasis in the esophagus and lung (that I know of). Let me know how it goes with MCAD and Dr. Kroker, will you? Nice to keep a doc (or three) on the back burner if plan A or B doesn't pan out! Take care.

Cymbalta was very good for my neuropathy/autonomic symptoms, but I shudder when I think about coming off it. It took 6 months. I had to take the capsule apart and count out the little timed release beads. I had very strange sensations; brain skips and brain zaps while I was going through withdrawal. My brain felt like a badly scratched 45 rpm record that kept skipping! I finally weaned off at 2 beads.

Good find. Has anyone tried L arginine?

My dentist uses Carbocaine.

Lyn, I saw Dr. Kroker in 1984-85 when he had just started his practice. He diagnosed candidiasis, beef, mold and milk allergies. Unfortunately, MCAD wasn't a consideration that long ago. He is an excellent physician.

Your post caught my eye (no pun intended). I started out with just ptosis, but over the years the muscles in my entire face will sag during the very worst times. Just what a gal needs — looking 25 years older on top of feeling awful. Myasthenia Gravis was one of my previous diagnoses, and I did take Mestinon for a while. It seemed to help a bit, but another doc ruled out MG and yanked the Mestinon. You know how that goes. My serum Norepinephrine runs high sometimes. This is the first time I've heard that no Norepinephrine can cause ptosis, but I don't know a whole lot of anything. Interesting.

sue and Lyn, I'd like to hear about this as well. I've always had a thin build yet I have glucose intolerance with hypoglycemia and hyperglycemia. My A1C is elevated. I'd love to know if there's a connection here.

Yay! This made my day, thanks for sharing.

Hi Lyn, and thank you very much for sharing! Sounds like you and I have a lot in common. I'm not fully diagnosed because I was given a screen rather than a full test back in '02 or '03, but it was abnormal in the same areas as yours. I'm preparing to go to Ohio to see Dr. Grubb so that I can try and put finality to my diagnosis. Do you also have severe neuropathic pain? I do, and much of that also depends on day/nighttime trends, what/how much I've eaten, my level of activity (not much) and whether or not I am able to get enough sleep. Take care!

I'm wondering if your potassium and magnesium levels are within normal range? Both of mine are low and my docs prescribed supplements to help with muscle weakness and arrhythmias. Low potassium can affect the heart's rhythm, but it can also affect skeletal muscle and paralyze them temporarily. I'd be a rag doll without Rx potassium. I'm sure Mayo will do comprehensive metabolic blood testing. Good luck.

Naomi, I think blood volume changes are incredibly important, and in my case it changes frequently. You weren't hypovolemic during your nuclear test, but that doesn't mean you haven't been (or aren't) hypovolemic at other times. It's all about timing. . . . Like when I go to a long awaited doctor's appt. and my BP is pretty normal when the nurse takes it, but it was 65/33 just two hours earlier?

Oye, the narrow pressures. Good point.

Thanks Ernie, good to know you had good experiences. My doc wants to refer me to the NIH as a general patient with an unknown diagnosis, not necessarily for dysautonomia.

Has anyone here been to the NIH? I saw my nephrologist yesterday and he also encouraged me to see Dr. Grubb. Yay! If seeing Dr. Grubb isn't conclusive, he's writing a letter to the NIH to see if they will accept me. Just wondering if anyone here has been to the NIH and if so, what did you think of your workup? Was it conclusive?

Naomi, Your nuclear medicine test was normal at the time it was performed, but that doesn't mean you don't go in and out of a low blood volume state. I have chronic-ish hypovolemia. It's a decreased volume of circulating blood in the body and it causes tachycardia. Dehydration can cause it, but bleeding is another cause. Orthostatic hypotension is one of the signs/symptoms, but it's another chicken and egg thing. It's usually diagnosed by signs/symptoms and drawing blood chemistry; CBC and sometimes kidney function tests. I drink plenty of Powerade Zero to stay hydrated and it helps a lot.

I'm overly alkaline. My aldosterone is low but so is my potassium. This makes no sense. Also, my urine pH is 8 and sometimes even 9. This is an interesting subject, issie.

Julie, Thanks so much. I suspected it came from both lines in our son's case. Thus the many off the wall type of queries I've posted. So odd that we unwittingly pair up into a relationship with someone who has a disorder so similar to our own. Your hubby sounds very much like mine sans the connective tissue issues (that's my bag). He also had quite the difficult time throughout college, was booted halfway through, but returned and graduated. My son is 14 and like your son, worsened just prior to puberty. He still gets bad during his growth spurts. He was erroneously diagnosed and treated for Autism from age 4 through 10 but it turns out it was the Narcolepsy/Cataplexy all along. He didn't ever have Autism, he was simply too exhausted to speak or interact with anyone. What a change in him once N & C were diagnosed and treatment began! It was truly like an awakening or rebirth talk about a miracle and enormous relief! He's just a regular chatty and social young man now with some big bumps in the road from N and Cataplexy. I'm sad about all of his lost years, but sooooo thankful. We do have a leg up with the knowledge we have now. Blessings to you and your family.

Thank you, Tuesday and Libby. Libby, that was an excellent description. Thanks!

Jana, I'm sorry to hear you're a fainter. Yuck and ouch. Hubby is currently taking Dexedrine and our son is taking Ritalin plus Clomipramine (for the cataplexy). I don't remember where his BP started and ended and we don't have a copy of the medical records. Hubby's HR is really slow at around 50 BPM (he's not athletic), but his BP is normal. Thanks so much for the kind words.