nantynannie

Hi Jessica, I am soooo sorry that you are feeling yucky. I know exactly how you feel, though not exactly, because I am not pregnant! On my last recent stint with this problem, no bathroom for 9 days. I have slow gut motility. I am not sure what you can take, but I will tell you what has helped for me: I went to the health food store and picked up a colon cleanse to get things moving again. Then I started on 30 grams of fiber from psyllium husks every AM with OJ, and a very large bowl of Raisin Bran (8 grams fiber per serving). You can also try Triphala, which is a very mild natural laxative available at the health food store. I know you said that you eat lots of fruits and veggies, but we need a minimum of 30 grams of fiber a day, which is hard to reach without a supplement of some sort. Pregos and slow gut people need a bit more to keep things moving. I wish you the best in overcoming this problem... Ann

Hi Friday, I also had saline during my TTT. My test was very abnormal, so I did not worry about it, but it can definately interfere with results. Certainly the meds interfered. I was wondering what other disease they are looking for? And have you had a TTT without the meds? The other thing is that if they put you on beta blockers, then they must have known that SOMETHING was wrong. Maybe they already diagnosed POTS and wanted to see how the meds are helping? One thing is for certain like the other member mentioned, you do not want to have to deal with that "normal" test because other docs will try to blow you off if you are normal. Make sure to request that the doctor's report indicates the reason for the test and that you were on saline and beta blockers. I hope you are able to speak with your doc soon, Ann

Hi Everyone! Any one else have this? It seems to be one of my favorite questions! I guess it makes me feel better if others have had similiar situations and then I don't panic too much with every new symptom... The technician at my CAT Scan said that I had fluid in my lungs. I did not think anything of it until later when I realized that I should not have fluid in my lungs. I looked it up and discovered that lung fluid can be related to the heart not pumping properly so I am wondering if it is Dysautonomia/POTS related? Thanks for any replies! Ann

Hi Sue, My neuro has cautioned me against general anesthesia. In fact, she is so adamant, that she only wants me to use it in a life threatening situation. This might be overly cautious because I mentioned it to the group and many answered that they had had surgery with no problems. Either way, the anethesiologist MUST know that you have autonomic dysfunction so he can take extra steps to monitor you properly. My ortho surgeon said that many anesthesiologists will not want to undertake the extra risk. Maybe this view is too conservative, but I found it interesting that two of my doctors advised against general anesthesia. I have had IV sedation with no problem, except that I need 3 times the normal amount of medication. Hope you receive some good advice, take care. Ann

Check out erythromelalgia.org. The website is for the EM Association. Ann

Hi Mindy, I have the condition you described in my hands and feet. It is called Erythromelalgia or EM. In my case it is a counter part to Raynaud's. Be very careful when cooling your hands because it can cause tissue damage. Ann

Hi Mighty Mouse, Please forgive my inability to find the info on that post at the top of the page...I was just wondering, what was the final saying, color and material? Thank you very much! Ann

Thanks guys, I appreciate the replies. This condition seems to have to boundries! I guess it must be lack of blood flow to the legs. That is what it feels like to me. Sometimes my whole body, legs arms, hands, feels this way. Almost like severe anemia. Ann

Hello All, Just wondering what the final outcome was on the bracelets? I remember I voted and then the website had to be redone. I was wondering what the bracelets will look like/color, etc. and what they will say? THANKS! Also, how to order and how much $$$? Ann

Hi Everyone, I have not posted in a while and have not been able to keep up on posts lately, so I hope everyone is doing as well as possible under the circumstances. I am coming to you guys with this question because there is so much knowledge on this site! I was wondering if weak, wobbly, spaghetti legs that come on suddenly could be POTS/Dysautonomia related? It almost feels like I don't have any blood in my legs. Sometimes my arms feel the same way. Thanks as always for any replies. I appreciate all of the great info and advice I have received from the members here! Ann

Hi Seaboard, I am sure your doc already thought of this, but the only thing I can think of besides allergies is possibly a body lice. They like all of those places you mentioned and around the finger nails. And it itches like crazy. I know it is gross, but since it is spreading, it is something to consider. The treatment is a lotion (like Nix) that you apply all over the body and leave on for a few minutes, then repeat in about 7 days. I had a friend with this and the derm did not catch it as lice. I know it sounds gross, but anybody can get it. Good luck. Ann

Hi Everyone, Thanks for your responses! They said it was not spinal cord, so I wonder if it is a nerve problem. I was unable to feel the sensation of "going" yet, later I could feel the sensation for a normal bathroom break. I don't know what it is, but at least I know it happens to other people too! Thanks, Ann

Thanks guys! I have been ordered to go directly to the hospital to get an MRI. I also have a c6-7 spinal stenosis. I guess they will just make sure that it is not pressing on the spinal cord. Ann

This is embarassing for me, but I have to find out if this could be dysautonomia. I have had a loss of bowel control! Twice in the last two days. I have a call into my neuro, but was wondering if anyone here knew. Thanks, Ann

Jessica, I am pretty sure that IGM means recent or active infection, while IGG means that you were exposed, but probably don't have active infection if IGM is normal. Don't know what NE is. Ann

Hi Future Hope, I agree, there is something about the car, driver or passenger I am always in pain in the car. The only thing I can suggest is to put your legs up on the dash or on the seat in front of you. A lot of times that helps me. I think the heart does not have to work so hard to get the blood up from the legs. Ann

Hi JLB. I recently went to a TOP neurologist who refused to hear that there was something wrong and diagnosed me with depression. This week, I went to a dysautonomia specialist neurologist who immediately diagnosed dysautonomia, POTS, and sleep disorder. I think it has a lot to do with the doc's experience with the illness unless you happen to be blessed with an incredibly open minded physician. Have you checked the website for a doc in your area? Otherwise, you might be banging your head against a wall. I wish the best for you. Ann

Hi Sue, If they are doing a contrast MRI with an injection, make sure it does not have adrenaline, as you could have an adverse reaction. See what your options are. Ann

Jessica, I don't have many suggestions other than some dried foods and bottled water. Flashlights of course. I will be praying for you and everyone in Flordia to get through this hurricane. I am sure many others will as well. Check back when in is safe. Ann

Hi Everyone, I did not ask for much of an explanation, but she did say that for me (and I assumed others) my nervous system was too unpredicatble and things could go awry with BP and HR. Also, she said that I would be very sick for a long time after the surgery. Now I wonder...maybe this is just her own personal opinion, or just for my own case and not others. I don't know, but thanks for the input! Ann

Hello, I am curious as to one of your symptoms-the floaters. I also got a massive amount of floaters in what seemed like one day, though maybe it took a while to notice them. I doubt that because they are too many not to notice. What has the doc said about your floaters and did they come on suddenly? I am glad that you found this forum, you will find many answers here. Ann

Hi Everyone, I thought that this was important information to share, though it might not pertain to everyone, or maybe you already know this...my neuro and dysautonomia specialist told me yesterday that under no circumstances (short of life threatening emergency) should I ever have general anesthesia. I am supposed to have surgery (fusion on my neck) but she said absolutely no way. Anyone else heard of this? I think that we should all know that we should not have general anesthesia, maybe I am the only one who did not know? Ann

Thanks Nina, I will check those sites when I have more time. I appreciate your reply. Ann

Hi All! I have been gone for a week, so I hope everyone is well (I have not had a chance to read the posts). I have a question and don't have time at the moment to search the net, so I was hoping for your collective expert advice...I saw a specialist today that rx'd Dysautonomia, POTS, and Orthostatic Intolerance. I was wondering, is OT and POTS the same thing or are they different? THANKS!!! Ann

Hi Stacey, I think you have a great idea...I also have a LIVESTRONG bracelet. I think that Lance Armstrong can inspire us to overcome even though we might not have cancer...we have the same type of story. I do not know how to help with your idea, but I am sure you will get some ideas. Ann