Maiysa

Hi Tinks, Sorry you are having so many issues. It sounds awful. I was diagnosed with something called autonomic dysreflexia-it's mostly in people with spinal injuries and I don't have any so the doctors are a bit confused. I see that hyper reflexia s listed in the same category. They did a spinal tap and thankfully nothing showed up. I also have some jerks in my hands, but haven't seen doctor since this started. I don't know what it is. I did not have any lesions though, so that was good. I'm curious what they find. Please keep us updated. Anyhow, organic....doctors really amaze me sometimes. They just don't get it. My doctor wrote something about something being psychosomatic before I was diagnosed. I asked her about it and her face turned red. It's easy to write this stuff down when doctors don't have to be confronted with it. I was kind when I asked my doctor why she wrote that and I told her, well if that's what you think then please send me to a psychiatrist. She back tracked and said that she was only putting that in my record so that doctors would stop doing dangerous tests on me. Ummm...okay, I thought. She said it's clear that you are very sick, but I do think you get yourself in a panic sometimes and that hyperventilating can cause blood pressure issues. OH my gosh, I swear I have never hyperventilated, not once. But she didn't care and would not take it off of my record. So I only go to her now for easy colds or something. She just doesn't get it. And even after Mayo Clinic diagnosed me and I quote, I went to her for a follow up and she said, you must be disappointed in Mayo Clinic, that diagnosis means nothing. I have several patients with it! Not a big deal. All I could think was ....wow, wow! That shocked me, especially since my doc at Mayo said what I have is rare. Idiopathic Autonomic Neuropathy with autoimmune aspect. Evidently there is an epidemic in my town of 15,000. haha. I have had to tell myself that I know I'm not well and if a doctor doesn't get it, then that's their issue and I do my best to move on to better docs who understand, but it is frustrating and sometimes it hurts my feelings, but I swear I'm more used to it. I had to kiss a few frogs before I found a prince of a doctor. I saw a cartoon and wish I could find it.....It showed a sick person looking at the doctor-the doctor was standing there with a clipboard and said, well, all of your work ups and blood tests are normal, so you must be crazy. It made me laugh. Issie, wow your situation sounds tough. Really sorry to hear. Have you ever been diagnosed as a Chiari I? Have you ever looked at the Chiari I diagnosis on line. There was a girl on mystery diagnosis and she had this. She was just in high school and was partially in a wheel chair. They finally did surgery because the Chiari was questionable. But once they got in there surgically they were able to see the problem, it was a Chiari 1, but was causing some serious issues. That surgery changed her life. So it was a happy ending. Not saying you need surgery, but was just curious if the Chiari was looked into further. Just a Chiari 1 for some people can cause terrible problems.

I started juicing and also vitamix..blending, but only in the afternoon since my blood sugar is too sensitive in the morning. I use spinach, quarter size of ginger, carrots, kale, half an apple and pear, also on occasion I add a few papaya seeds because they have enzymes that help me break down my food. I also have to do my own stomach massages a few days a week. I just rub along the path of the intestines for just a few minutes at night. All the above have helped me so much. I'm not completely cured, but my life in this area is much better. I also had to cut out gluten, that was so hard, but there are lots of good alternatives now days for breads. But you have to ask your doc about ginger since it can be a contraindication for certain medications. It can thin the blood. But the ginger has helped my inflammation also. I tried all the medications and I had reactions to them, so had no choice. Good luck.

Thank you Jana. I'm a sorry mess right now , but I know this is not forever and hopefully soon it will pass. You are soooooo lucky....nine months. I'm so close they said. Thanks for the support. I'm so embarrassed though that I kept going to Urgent Care in tears, I truly thought I was done. But my fever was so much higher than usual. My body was probably in shock after not having one for 3 or 4 months.

Julie, I'm sorry about your illness, but so glad that you found a good doctor to help you. I have to tell you that I've had autonomic neuropathy for years, but no doctor recognized it and blew me off. I tried to get to Rochester but can't travel without having a seizure. I called the Mayo in Rochester and they gave me a heads up and told me that Dr. Goodman was moving to Arizona.....so I waited almost 4 or 5 months. I was so lucky to be able to get in the first day......but it sounds like he is getting very popular, I'm sure it won't be easy to get in now. haha. But he was the one to diagnose me and it was so nice to have a doctor who didn't look at me like I was crazy and to believe me. It was a great experience and he explains things so I can understand them. My insurance doesn't cover Mayo so he does his best to help me so I can do my tests back home and he always calls back and his nurse Janie is also wonderful and very compassionate and helpful even though I'm about 5 hours from them. I hope you can do something that helps you. He also thinks I have autoimmune, but for me, it's not showing up in my blood so I can't do the IVIG. Let me know how it works. Wishing you better health soon.

Thank you Dizzysillyak! I can't wait to be through this. So glad you are out of that loop.

Ginger, I see you have mitral valve prolapse also. What exercises does your doctor let you do? Or is this an issue for you? My sister has it and I know exercise can flare it up for her, but only occasionally. I sent you a PM to tell you that exercise isn't my issue for the flare up. Haha. So silly that I was so worried. Anyhow, thank you for your support. Maiysa

After 2 visits to Urgent Care, fever of up to 101, panic, constant flushing, fainting, crazy blood pressure fluctuations, itching, and pounding heart all night...it's just a menstrual cycle. Haven't had one since this summer, thought they were gone. But at least this explains the big flare up. I swear I'm allergic to my hormones!! Every time it feels very much like a stomach flu. This happens every time, it had just been so long. Oh well. Now comes the anemia again, so hello hamburgers and iron pills. Ugh... But at least I know!! Good excuse to just watch Frasier and Friends for a few days. Thanks for letting me vent. Have a nice night.

Jangle, I'm sorry to hear that. Does your insurance allow you to travel to Mayo or anything like that? Neurologists are the doctors who deal with autonomic neuropathy. Can you make a visit to a good neurologist where you live. Try not to be too discouraged, I know how doctors can be dismissive if they don't understand anything...but I actually saw almost 17 doctors locally before we went to Mayo, so I understand the frustration. IT's such a rare disorder and my local doc told me he would have to go to two more years of medical school to just be able to completely understand my issue and then have to specialize in it to help it. So it's not easy finding a doc that understand these issues. So so sorry that you have to deal with this. Hang in there.

Update on my earlier post on exercise. Don't over do it! I think I over did it and now I'm having a bad dizzy flare and fever. Ugh..... Anyhow, this happened right after my longest time on the stationary and I think I got overheated. I'm just guessing, but I don't know why I just got knocked in the dirt this time. It was what I was doing a few hours before the flare. So don't over do it.

Yeah, thanks for the tips. TCP!! Am curious Jangle....did you have a QSart test? This can show autonomic nerve damage. This machine helped immensely in my diagnosis. Also, TCP, I have autonomic neuropathy and how do you know if it is affecting your liver? I now have cysts on my liver and high total billirubin count and now I have fatty disease in the liver, although I don't drink any alcohol and never really did but more than a few glasses in the day. It doesn't make sense and I'm almost under my weight category and eat a lot of organic fruits and veges. So a messy liver doesn't add up. Also, Jangle, I agree with TCP, if I do small amounts of yoga and maybe just a few minutes of walking or stationary bike, something to get my circulation going.. the numbness in my extremities gets better. But if I over do it, I can get the same numbness which almost feels like inflammation and then for me I take some children's ibuprofen to take out the inflammation.

My situation is similar to Janie's. I had an infection that triggered my autonomic neuropathy in 2006. But... I actually had a mis-diagnosed dysautonomia situation since about the age of 8-10, diagnosed as petite epilepsy, which was incorrect and was actually dysautonomia I have been told. I had severe black outs that started at age 21 that only happened every few years with extreme medical situations. But after 2006, it doesn't take much. I was told by Mayo that the damage is possibly irreversible. I was told only time would tell if it is progressing. But unlike Janie's, mine has idiopathic autonomic neuropathy with autoimmune aspect written as a diagnosis. But that the autoimmune is yet to be determined. None of the usual suspects are showing up. I think every case is possibly different, but a very good question. I actually have been told by a few docs that it is unlikely my nerves will heal.....BUT.....I have lots of hope...even after 5 years. Anything is possible!!!

Thanks Arizona Girl. I have autonomic neuropathy and didn't know this. haha. But have always wanted to know because people talk about small fiber neuropathy and wondered if it meant the same thing. Thanks for posting!

Hello Potsgirl93! I don't have POTS, but have a form of dysautonomia called autonomic neuropathy and my stomach issues are terrible. I have a lot of nausea, but I also have gastro paresis. Fluid used to be really hard on me. I slowly...slowly worked my way into juicing and that has helped me a lot, but I still have some pretty bad days now and then. Wish I knew more. Has your doctor been made aware of this? I had to do some testing to get my diagnosis, but I do notice there are a few on here also with POTS with gastro paresis. What that is..is where the nerves in the stomach become somewhat paralyzed or sluggish and food does not move through like it should and it just makes a person sick. Feeling full all the time. And when I'm having orthostatic issues, I notice my stomach gets worse. Hope you feel better soon. It sounds like you are too young to be dealing with these issues. so so sorry. I'm 47 years young and I don't like it. Can't imagine how boring this probably is for you. Hang in there.

Hello Ice Skate, I just wanted to tell you that during a 2 year bout with an infection I was told after a four day stay at a hospital that I had some form of POTS and was sent to a cardiologist. It took months to get into him and by this time they were treating the infection so the POTS situation started to get better, but was still fainting and having many other issues. But local neurologist felt I still was having some symptoms for dysautonomia-dysfunctional autonomic system. So, I went to Mayo and had a negative tilt table test. But then while in a different situation I fainted and blood pressure was all over the place. Doc said, for me, the fact that the tilt table test was negative, could have meant that it just wasn't my trigger-which was strange since I fainted the entire car ride there. If nothing showed up during my visit at Mayo he was going have me do something that makes this situation of blacking out and nausea happen so they can get a reading and retest the tilt table. But they did the QSart test and mine was positive for autonomic neuropathy with orthostatic intolerance which explained most of my issues. MY blood pressure can go 30-40 points higher if my system is off balance and then my brain is getting the wrong message making my blood pressure drop as low as 58/36. I'm not saying that you have what I have because it does sound different and I don't know a lot about POTS, but for the QSart was what diagnosed me. These machines are rare, but Mayo has them if you are near either facility. And I don't know much about your situation, just giving you some ideas since I do have a few similar issues you have. But of course, they could mean many other things. Can I ask where your numbness is? Because for a few years this was one of my biggest symptoms that was a clue for my doc. Also, I have to tell you that the summer issue is interesting. I can do much better as long as I don't get too hot. I've been exercising as of late and am curious if this has caused my situation to flare up. Heat is not my friend. Also, I had leg twitching. But my legs hurt also, mostly in my shins. So, do your legs hurt? Or is it mostly twitching? So glad you are going to a neuro. Hopefully they will help you. I was diagnosed with restless leg syndrome, but I was sensitive to most medications, so I decided to read about it first. I read that most restless leg syndromes are mostly from anemia. So I got a blood test and I was very anemic, but it mostly showed up in my ferritin levels, not my red blood cell count. My numbers were so low that I was a candidate for a blood transfusion. For me I chose to take iron and within days my legs felt somewhat better, but wow, what a difference in a month. But don't take iron unless you talk to your doctor! Always check with doctor first! Iron needs to be monitored. Red meat is very helpful too. But now I have some twitching in my fingers and I know this has nothing to do with anemia and is probably the neuropathy. Just giving you some ideas to work with. Hope you can find some answers soon. PS, remember I'm not a doctor...just a patient. Let me know if you have any other questions. Good luck!

Hello All!. I was having such a nice few weeks, best in 5 years. I got a stationary bike and it is making me feel stronger, but then just out of the blue I got very sick with nausea, lots of bathroom time, blotchy, sweaty, blood pressure was about 146/88 (my norm is 88/59 or so) at night with heart rate of 92 all night and now I have an intermittent fever of 99-101. My body went into some type of panic and it scared me. The fevers mostly come at night or flushing and now this morning my fever is gone, but I'm so tired. It's been going on since the 27th of December. I'm afraid to get on the bike right now, not that I can, but when I feel better I want to, but am concerned that it might be over stimulating my immune system. I don't have POTS, but only orthostatic intolerance and autonomic neuropathy. Any ideas? Thank you. I would go to the local doc but they just blow me off any how. I can call Mayo but want to wait till I go back for my check up, whenever that will be. Waiting for my money tree to bud some more dollar bills.

I got this from all the extra salt too. I notice it's not as bad in the summer, probably because I need it more, but I asked if I could cut back because I did start having a lot of swelling and I noticed it didn't help my headaches. oooohh, I would not take those diuretics without talking to your doctor. It might dehydrated you instantly and make your POTS situation worse since it can cause dehydration along with other things. Hope you feel well soon.

Wow, proud of you Potsgirl for being able to do that on the treadmill...good for you! Of course I have to say this... be careful. Don't forget to mention it to the doctor. The treadmill is like several free glasses of wine for me. I got tired of the drunk feeling so switched to an upright bike and I don't get as woozy. I have the opposite of your situation, my heart and blood pressure travel up too fast. For the cardiac stress test, I only had to walk for 3 minutes to get to the high heart rate they needed. But I find it so strange that your blood pressure stays the same. Hmmmm...I hope you get some answers.

Hi Ginger, I don't have POTS, but autonomic neuropathy, I'm extremely dizzy and have orthostatic intolerance and episodes where my blood pressure gets stuck on high and I black out, so I understand a bit of what you are dealing with. Anyhow, before this terrible situation, I did light 45 minute weight lifting 3 days a week and daily bike rides, hikes, yoga and tons of walking. I was very athletic. For the first time in 5 years I got on my bike in late 2011. It was so exciting!! I never dreamed I would be able to do this. But I was so so so dizzy at first. It scared me terribly. But luckily I had a patient friend to go with me and a helmet was mandatory!!!. I had tried the treadmill and that was like walking drunk. It was awful. I tried at least 12 DVD's, sad but true, they were too hard and I bought a pilates machine, that was the worst. It hurt my back and neck so much. I was so discouraged. But the bike ride was easier than all the above, but I don't feel I should be riding my bicycle around town because I don't know what my immune system is going to do, so I went on Craig's List and bought an upright stationary bike. You can find them reasonably priced right now since many are getting rid of them this time of year to try new equipment. I feel the more I use my stationary bike the stronger I am getting, but it is very tricky at first. Of course you have to ask your doctor if this is okay and if you do try this with doctors consent...make sure someone is there when you are starting out and don't ever ever over do it! It can be dangerous and I don't know your situation, so of course be careful. Anyhow, I have had a little bit of a set back this week and am a little frail to bike, but hopefully I will be back up on it soon. But it has given me so much hope! With these conditions everyone is in a different place with their activities, so if you're not there, don't let that discourage you, but check with your doctor to see what would be best for you. Stationary bike is what my doctor recommended. It is my hope also to get stronger. I really feel just the short time I have been doing this, it has helped to push out a lot of the pain and stiffness and I feel slightly stronger. Also, mentally, it makes me feel so good to know I am at least trying. Five years ago, riding a bike would never have been any type of option for me. Things can always change. Let me know where you are at with your experience. Good luck in 2012 and I pray you can get stronger very soon.

Thank you Janie. I love Real Coconut Water by Taste Nirvana. It seriously tastes like a cookie. 16 oz. has 5 essential electrolytes and 1000mg of potassium. 12% magnesium. 6% Calcium. 6% Iron. 8% Vitamin C but 15 g of sugar, it's naturally occurring and 0 fat. In the summer this drink is so nice with a squeeze of lime. Only ingredient is coconut water. Because of sugar I only drink it after my blood sugar is stable in the late morning.

Thank you Mack's Mom for the posting. I listened to the entire conference...wow, very informative. I had a lot of questions and thankfully there were people there to ask many of the questions I had. I just posted the other day about why is this happening at night and they addressed that in the video.....um...I can't remember the answer though. haha. Oh my gosh, I've had 4 hours of sleep, I'm goofy. And I've had fibro since 1997? I think it was. I was extremely athletic at the time and they told me to exercise more. It made me laugh....I knew it was much more than just exercising more. And thank you Carol (Potsmama) We are definitely all in this together. Here is a nice quote that says it all. Friendship improves happiness and abates misery, by the doubling of our joy and the dividing of our grief. Marcus Tullius Cicero

I love the coconut water. IT has more potassium than most of the drinks and it's all natural. AM I allowed to put the name brand I like?.... because it's delicious and I've had some yucky coconut water. But let me know if you want the name. I can't drink too much of it, since it does have some natural sugars, but not very much.

Thank you Jenna and Puppylove. Yeah, my average temp is usually 97 to 98, so 99 is high for me. HI Katie, yes, I did have the autonomic sweat test and mine was "0". Doc said they usually get some sweat, but I had no sweat at all. But it's strange, occasionally I will sweat for no reason. I know my thermostat is off. I think I told everyone this already, but my husband has come home a couple of times with me sitting outside and me saying, oh my gosh can you believe it's 60 degrees out and it's December! That's when my husband became concerned and said, honey, it's 27 degrees out, another time it was like 30. I didn't have a clue. But, today it was 64 and it felt so cold outside. Hmmmm Anyhow, thank you for the awesome info, I will tell my doc at Mayo about the fevers just in case. I know when I get a fever, my body goes into some terrible strange reaction that I never had before I had this. So your info makes sense Katie. Thanks again.

I went to the Urgent Care facility again at a different location, had a better experience. I had another reaction where my blood pressure woke me up in the middle of the night, again it was around 140/84 and hovered around 127/85 and heart rate was 92 most of the night. I know this doesn't sound like much of a blood pressure, but mine is usually at the most 89/60. I had a burning feeling-my pupils looked like they were breathing-I had blotchy skin-my throat felt tight again and then I got a little scared. I'm a chicken sometimes when this happens. I meditated most of the night to keep my system calm. Anyhow of course by the time the urgent care opens, most of my symptoms are gone, but for some reason I had a fever of 101 the doc said. She laughed when I said I couldn't even feel it. This isn't the first time I've had a fever and not had a clue. I think I've become so used to not feeling well, that it just doesn't even register anymore. Once it got to 102 and I didn't have a clue. By the time I left the fever went back down to 99. Of course not much they can do-but gave me some cream for some itchy areas on my skin which helped my immune system from over reacting to the burning. Thank God it helped. But does anyone else get fevers? And why does this mostly happen at night?

After reading all your comments, first of all thank you so much for your support. I admit at the time I was hurt and upset, but I'm getting so desensitized to silly doctors like this and I just went about my day after a few tears. I thought, I'm not going to let him ruin my day. A friend of mine actually treated me to an energy working chiropractor and the timing was right, my appointment was directly after my Urgent Care debacle and it was so relaxing. So I didn't care after that. Anyhow, you are all right, he is probably treating someone else the same way and they might not be as desensitized as I am and it will probably do them in. So I am going to report him. I kept thinking about how this doc could lose his job and I don't want to ruin the start of someone's new year, but he was out of control that's for sure and it wont' be fair for anyone else to have to deal with him. He is like a ticking time bomb and I thought.....this is silly......but what if he finds out I turned him in and goes nuts. I will have to go on the witness protection program. haha. I'm kidding....a little. Anyhow, I will call today. Yikes. And Mack's Mom, I will look at that link. Thank you. I can't find a doc anywhere in the Nevada or California area and emailed the support group gal for southern california and the email came back. So will keep looking. Thank you for the info. Happy New Year to Everyone! Let's hope it's a healthier one!

I had an interesting morning yesterday. After eating a bowl of Asian noodles the night before, I had a reaction. My sinus's instantly went dry. At midnight my blood pressure jumped from being low to 146/75 and I was sick in the bathroom all night. It was scary because I couldn't get warm, shivered all night-then the sweating, dizziness and fainting continued for a long time. This type of intensity happens several times a year, so I know it's not food poisoning. My throat felt tight in the morning-my tongue was red, so I drove to an urgent care facility early in the morning. Of course by the time I got there my body started to ease up. I was still having bathroom issues but throat felt better. I told Doc that I was told this is possibly an autoimmune situation, but if we could please do a tryptase test to rule out that it's not an allergic reaction or a mast cell situation. He said, well you are fine now, it's my job to stabilize you & you are stable. So strange, but this place has never said this before. But, I said I understand that, but this doesn't happen all the time and I would just like to make sure it's not an allergy instead of something else. I told him I work mostly with Mayo for this situation-my insurance doesn't cover them, and I usually get my tests done here through my health care and take them to Mayo. And it takes a few weeks to get into my family doc or any other doc in town and if I could just do the test now since I just had the worst reaction I've had in a long time. He said, well, I would love to help you, but if I do a tryptase test and you have mast cell, I'm stuck with you for the next ten years! I asked what? He said, if you have Mast Cell, I will have to follow up with you for the rest of your life and if I'm on vacation and you get sick and I'm with my family, I have to stop everything I'm doing to come back to make sure you are getting treatment okay. Huh?? I said to him, No no, I will not bother you with this, this is going to my doc at Mayo or who ever else can help me and that's only if it's positive, but I won't know till I do the test. Then he told me that the lab there doesn't do this test. I told him that's not true, I did one here the other day. He said then you go back to that doc and get him to do the test. I said, I did have slightly elevated tryptase, but that doc didn't seem to know about the Mast Cell disorder, and am in the middle of trying to find a doctor to work with on this, but since I had a terrible reaction can we just rule it out before I spend time and money going to another doc. It might not even be my issue. He said, yes, this is probably what you have, so what! take an antihistamine! I said, okay, Can we please just make sure and then I will not hold you responsible. I will sign something. He said, so you want me to put my whole career on the line to help you? I said, wait...what? He said, you liability if you have this. What???I said. He said you could sue me if you don't get help with this if you are positive. I said, no, I'm not going to sue you. Wait...what? I was so confused. He said and if you just have active mast cells, so what, take an antihistamine.-I am not going to be tied to you for the next ten years of your life because you want a test. He said, in my country I would love to treat you, you are obviously having some serious issues, but what doctor has two hours to do that and I'm not licensed for that here. He said he doesn't have license in US to be family doctor. Wait...what? I said again. He said, no I don't want to be tied to you for next 10 years. I said well, I would just like to know for sure please. I smiled the entire time and I was so nice because he seemed like he was going to snap at any moment. (Unfortunately this is the same clinic that took 2 years to diagnose a severe lung infection and they also missed for a year and a half that I had thyroid cancer and toxic thyroid. They didn't put it on the summary report from my CT scan. I'm the one that went over my records and found the nodules myself a year and a half later while I was on my death bed...knowing they missed something- Anyhow, I have to be a little bit diligent in my own care now since I know they don't care) So, the doc said, fine! I do test on you. I risk my whole career for you! and he slammed the door. He went outside and yelled something and came right back in. (Somebody needs a nap I thought) He said he talked to his supervisor and he said he cannot do test and to send me home and they will give my money back. He said, I will take you up front and get your money back. He was so angry. I swear to you, he did not have 5 seconds to explain that situation to any supervisor. He went outside and swore in Korean and came back in that's what he did. He took my coat and everyone was staring at me in the triage and I said, can someone tell me what is happening? I'm so confused? And he said, you liability!! His english wasn't so good. I was taken up front to the desk and he said to the receptionist, she never saw doctor, give her money back. My face was covered in tears and I was just in shock I didn't know what to do. I said, no I saw the doctor but he refused to help me. They didn't know what to say.....And I just left. I was so upset, embarrassed and confused. It was shocking to say the least. I wish I had a camera on me, because you would have had to see it to believe it. This is my health care that I pay $800 for month. Unbelievable. But I lived and I'm much better, a bit tired, but ok. I cried for a just a moment after, didn't want to spend any more energy on such a jerk anyhow. I understand that some things have to be done through primary and I will try to get a standing order for this test, but this guy was just so offensive. But I think I'm becoming desensitized to our health care system here in Nevada. I have a few good docs so I will just try something else. I can't imagine how the rest of that guys day went. He yelled, you have stitches or cold you come see us, otherwise, you find other doctor. Ummm...okay. Wow.