mkoven

I think I otherwise sweat appropriately. During my new work out regime, I sweat from my face, chest, legs, and I see droplets on my forearms. But the sweaty underarms is always independent of exertion, and tthe cold hands independent of ambient temperature. My hands and feet actually are FREEZING when I get a massage.

for what it's worth vascular eds is one of the more uncommon types of eds. as maxine said, though, other types can have vascular issues though. POTS, for example, is basically a vascular issue, at least for those with eds, if I understand correctly.

I think the normal response is for hr to increase no more than 15-20 bpm, and and bp to increase slightly. Postive for POTS is 30 or more increase in hr. Postive for orthorstaitc hypotension is a 20 point drop in systolic and or 10 point drop in diastolic. and of there are other ways of responding abnormally, but those are two measures of ans function they look at.

If licorice is like florinef, I would just want to make sure that you aren't having problematic side effects. with florinef, you need to make sure your potassium is okay and that your pressure isn't getting too high. Personally, I prefer the idea of florinef to licorice, as it's more standardized and more thoroughly studied. I'm not opposed to supplements in general, but if licorice is like florinef, and florinef is powerful stuff, well you see where I'm going.

Vascular eds is actually the easiest one to rule out, as it can actually be tested for. Most of the other types are diagnosed clinically. I don't know who would be good in Germany. I would check out www.ednf.org and see if they have any resources. The other types need to be taken seriously, but people generally live normal length lives. and some people are diagnosed with eds and have relatively mild issues...but it is still worth pursuing, both for your own peace of mind, and because it may change your treatments and any other testing-- and not only for pots. It is unfortunate that there aren't more knowledgeable doctors around. Maybe you could be in contact with either Nazli McDonnell or claire Francomano and they could tell you who to see in Germany? I'm sure they have international connections. It helps me to have an explanation for all my different issues--otherwise I also was beginning to think I must be a hypochondriac!

yes-- but sciatica is also very common in the general population. But if the cause is an unstable back, or prolapsed disc, edsers may be more prone. I have had sciatica over the years and it is NO FUN. I have had back surgery--also NO FUN. Bad discs, sloppy pelvic joints, tight psoas.

yes, yes, and yes!

sadly, I'm allergic to the active ingredient in antiperspirants, so sweat I must. I can wear deodorant--so at least I don't smell bad. but it's hard to find outfits that hide the often impressive sweat stains.

Great! Can you tell us more about what you prefer? I'm on straight cpap.

Too bad I didn't know that I had various syndromes when I went there. My note was just to say that Mayo has amazing resources, and great doctors for specific issues. But for me, just because it was Mayo, didn't mean they were able to figure out-- and I then got the copout diagnosis we so frequently get when doctors don't know what's going on...even at Mayo.

As long as I can remember, I've always sweat an inordinate amount under my arms during the normal course of a day, and my hands are often ice cold. Is this related to ans issues?

I think it's important for eds to be diagnosed, both for our own safety. It's important for doctors to know that we may be more fragile than "normals". I think it's also important that it be recognized how prevalent and underdiagnosed eds is. If we all got appropriate diagnoses, it could help move research forward by showign that we're not so rare, getting more funding, and better understanding the connection between eds and dysautonomia. So in other words, it could save you in a pinch, but it can also help raise medical awareness, leading to better understanding and treatment.

Not to be a downer, but I had a less-than-great experience at Mayo in 2003, and was given an anxiety diagnosis, along with chronic back pain. this was before all the eds and ans stuff really emerged, but in retrospect the signs were all there. there are some very good folks there, but I have to admit, it makes me reluctant to return. (One of my issues was intermittent numbness in my face and arm, and blurry vision that would come and go. i have since been diagnosed with migraines, but because the initiial symptoms did not involve pain, they tried to convince me it was psychosomatic...and it bothers me that that is in my records, if I ever did return. My symptoms now seem glaringly obvious--like how could they have missed that? Woman in mid-thrituies with transient neuro symptoms affecting eyes, arm, and peri-oral region, intermittent vertigo, but clean scans... now that i get pain with them, i have the right diagnosis.)

If I'm doing something in the kitchen that takes more than a couple minutes, I bring in something to sit on. It just feels too lousy to stand still. I haven't fainted, I just start getting a pounding headache and feeling really ill. I have a walked with a seat that is perfect for counter-top tasks.

Yes, definitely.

www.ednf.org is a great resource with all kinds of up-to-date info. My sense is that not many doctors are good at diagnosis. In my limited experience, it is geneticists, and sports medicine that have been the most helpful to me. (I saw one theumatologist who was not helpful. I don't know that he's ever seen a case before. and since I didn't look like the pictures in his textbook, he told me I was fine. but he did send me to a geneticist, who knew how to check for a variety of subtle signs. still, she was not terrible up-to-date.) I'm going to see Dr. Francomano, one of the top geneticists of heritable connective tissue disorders, in a month. there are tests to checkl for the vascular type (the most dangerous), and a test that is sometimes positive for classical. But very often, it is a clinical diagnosis. and there is some crossover of symptoms across types. I wish I could recommend more-- I see you are in Norway, and I have no clue who the appropriate doctors would be there. I think it is useful to have a diagnosis, so you can take proper precautions. I still have the occasional doc who disbelieves the diagnosis, and then says, "but have you ever had a dislocation?" when I say that my hips and pelvis come out of joint all day everyday, they usually stop disbelieving me. that is NOT normal. but my beighton score is not impressive--because those are not my worst joints.

Just a word of caution--once you've established you're hypermobile-- for whatever reason, eds or not--I'd advise against continuing to test your maximal range. You don't want to stretch things out any further.

theycheck range of motion in different directions. not sure what's normal, but you can google "normal range of motion" and you should see number of degrees for different directions, such as internal and external rotation, flexion, extension. I think, for example, it's unusual to have internal rotation of hips of more than 45 degrees.

It's a good idea to keep an eye on other potential problems with tissue fragility-- joints, organs, and vessels. I also find it helpful to have a unifying diagnosis. I don't have a very high beighton score-- I'm worse on joints not shown-- like hips, shoulders, jaw, toes. and some joints that don't look too hypermobile are still pretty unstable. I have my aorta monitored regularly, as aneurysms are one of the riskier things with eds.

I also seem to be catching bug after bug. I'm now on cold number three since christmas. i just get so easily run down, and then I get sick. I also think my hormones play a role, as I tend to always get sick around my period--like thr drop in hormones reduces my ability to fight infection. it's so frustrating. I'm still working, but on sabbatical this year, so I have more flexibility. which means I'm writing and researchg but not teaching--so if I need to lie down during the day and rest, I have that option, thank goodness.

Interesting! Since I also get migraines with aura, I'm intrigued. If there are no hormones, can I ask how it stops migraines and changes your period?

that's a normal side effect. for me that signals that it's working. it doesn't really bother me anymore.

Good luck, Ernie!

anyone know if it's safe for migraine with aura? I've been told no estrogen...

You could ask for a 24 hour ambulatory bp study on the current dose of midodrine, to what your bp does around the clock. If it shows occasional readings of 140/90, that's a different story than if it's all day long. Then at least you'll know the range and decide if changes need to be made. if midodrine helps you to function, esp. if your numbers are at the level you're reporting, I'd wait before cutting the dose. I've ended up in the er when I've forgotten a dose! Not that everyone is so dependent...