2manyfurkids

Thank you for all your responses. Looks like I'm gonna go. Can't put a price on your health, right? Will let you know how it turns out. Thanks again, Karen.

Hi, I have an appt in Neurology at Mayo Clinic in Rochester,Mn at the end of April. They say the average stay is 5-7 days and it is very expensive. Obviously, you have to pay for a hotel but what about medical expenses. My insurance covers 85%. But, 15% of thousands of dollars or more can add up very quickly! We don't want to be paying them off for years and years. As much as I want a definitive diagnosis, I'm concerned about the expense. What sort of tests do they do? Can anyone give me an idea of cost? Are they more expensive than regular neurologists and hospitals? Thanks, Karen.

Thank you for all your responses. My endo got me into a nearby teaching hospital neurology dept with one of the docs listed on the DINET list. The appt isn't until mid-Dec but at least it is sooner than Mayo. I will keep my appt with mayo and just wait. Maybe after seeing local doc he can get me into Mayo sooner. Seems like just showing up at Mayo I might have to wait a few days and with kids and lots of animals I can't really do that. Thanks again, Karen.

Hi, I am on the waiting list for Mayo(MN)for the neurology dept. Last week I was diagnosed with gastroparesis. They said the waiting list is 6-12 months. How did everybody that has been to Mayo get in, did you get a referral from your doctor and how long before you got an appt? Do you have any suggestions how I could get in sooner? My endo that referred me is "done with me" I think and gets her "assistant" to call me back. Karen

Thank you so much for your responses. I am on the waiting list for Mayo Clinic(Minnesota) and it sounds like I need to wait it out. I live in Wisconsin so it is only a 5hr drive. Thanks again, Karen.

Hi, I haven't posted in a long time. My doctors who originally thought Addisons Disease or Bartter's Syndrome are now back to the POTS diagnosis. My endo has referrred me to Mayo Clinic, but the waiting list is 6-12 months. Today, I had a gastric emptying study for gastroparesis. Otherwise, I feel like maybe I should wait for Mayo rather than go to another neurologist because I'm on Florinef already and with the help of this website, I can do what I need to do to feel as good as I can. Mayo has such a good reputation for research on Pots, I'm probably better off waiting, huh? Thanks for your opinions, Karen.

Wow, it is amazing reading this. I am going through exactly the same thing. I haven't been to this forum in years because the doctors changed my diagnosis in 2006 from POTS to Bartter's Syndrome. They said it was a mild case. They kept me on the Florinef and prescribed prescription Potassium. I felt better for a long time. A couple months ago I started feeling bad again. Went back to my nephrologist I see for Bartter's and he ran a whole bunch of tests. He said it is not Bartter's(low potassium)because my K+ is never low despite being on Florinef, which lowers potassium. He thinks it is the adrenals or POTS again. Amazing! Back to square one!! I went through this in 2006 when I was real sick and passing out several times a day. First they thought Addison's Disease, then the ACTH stim test came back normal, so they said POTS. Then, I was feeling better on Florinef but not that well yet. Then, they said Bartter's. The combo of Florinef, potassium, and magnesium helped the most until recently. So, I'm wondering is it POTS and I need mipodrine? or is it adrenal insuffiency and I need cortisone added? I recently went off the Florinef because I am seeing a new endo on Tuesday and I frankly wanted to see what happened so she actually believed I had any symptoms. What a difference!! All of my old symptoms returned. I am getting bad chest pain, headaches, dizziness, nausea, fatigue, horribly cold, all the symptoms mentioned in this post, like you. I'm afrain they'll repeat the ACTH test and still no answers. They are going to do adrenal antibody testing too to see if I have antibodies for Addisons Disease. Does anybody have any ideas? I'd greatly appreciate it. Thanks, Karen.

Melissa, I will be thinking of you. Get well soon! Hopefully, it's just a flu bug and you'll be home soon! Wishing you well, Karen

I know there were other posts about this topic but I just thought it was interesting to see that pop up today on the front page of Yahoo! Wow! Very sad for Greg, but on the up side this could really help raise awareness! If his symptoms are bad enough for him to have to quit, then maybe others can see what we are going through. My hubby says that now when people ask what is "wrong with me" he can say she has what Greg from the Wiggles has. I guess this will help with our doctors too. Not so easy for them to brush us off as if their is no such thing as POTS. : Karen

Funny, I was thinking of asking this very same question. I moved from the Mississippi to Wisconsin and love it! I was so miserable in the heat and humidity. I feel much better now that it is cooler. Not too sure how I'll feel when it is frigid out though. It has been amazingly mild so far! Karen

Thank you all for your responses. Went to the nephrologist today and mentioned it to him. He said it looks like Raynaud's Phenom. Just another thing to add to the list. Happy Thanksgiving! Karen

After a panel of endocrin docs at an university medical school looked at my records, they thought it wasn't an endocrin problem. They suspected I have Bartters Syndrome and referred me to a nephrologist. This disease is extremely rare so I doubt I have this. They thought this because I have high aldosterone but not high blood pressure. Also, lots of back pain on the right side near kidneys. Just wondering if anyone knows of this disease or had a doctor mention it as a possible explanation for POTS symptoms. Just another thing to rule out I guess. Karen

I went to put on my compression stockings this morning and the bottom of my feet were purple. Scary!! I was cold but, still.... I know you have problems regulating your body temp with POTS, but that seems weird. Not to mention, I forgot about the farrier coming even though I wrote it down. He was not happy with me after driving 39 miles! I was sound asleep and didn't even hear the dogs barking. Why do I have this annoying memory loss? Will never fully understand this POTS thing. Karen

I was a stay at home mom for 12 years and thought since my kids were getting older I might get a part-time job. I had to quit after less than a yr in March 06 because of POTS symptoms. That is when my crusade began to figure out what was wrong with me. Now that I know I have POTS, I think the way the doctors treat the disease(not taking it seriously)makes me feel like I SHOULD be able to work. We really need the money and despite the fact that I was only making $7.50/hr, it was a little extra. Funny, though after not working for so many years I was real tentative about whether I wanted a job or not(way before I got sick). Some friends told me, your husband will be begging you to quit in no time; by the time you pay for gas to get there, meals out, cooking less, time away from 3 kids, etc. is really isn't worth it. But, I did make friends and enjoyed being around the animals. I've thought about going back to work part-time but I'm honestly scared to death. Like someone said on this post, what if I'm having a really bad day. Last night for example, I couldn't sleep. Was up till 2am so slept until 1pm. Didn't want to, it just happened. It is really nice to have that luxury to do that. I'm afraid that it may not work out and then I'll feel guilty about quitting, feel like I failed, etc., so I just choose to stay home. Don't you guys agree though that no one, even family that lives far away and doesn't see you often, has no idea how life changing this disease can be? I sometimes wish I had what they originally thought, cardiomyopathy or Addisons. Nothing more serious than POTS, just something that at least most doctors know what the heck it is and consider it a real disease. A little sympathy wouldn't hurt either. Sorry for rambling, Karen

Wow, this forum is amazing! That is exactly what I have been wondering lately. Are my symptoms from POTS or is it the MVP? I was diagnosed with MVP with mild regurgitation on an echo by a cardio. I asked him directly, "Could the MVP be causing the dizziness, fainting,etc. ?" He said no. That is a separate problem. But, since being on the meds Florinef and Toprol XL, I feel more like its the heart more than POTS. I really don't feel like passing out anymore, mainly short of breath if I lift something or climb stairs. My chest tightens up at night(right about this time 8-9pm) when it time for me to take my meds. Then it proceeds to a minor headache, then nausea, ... Thought about calling the cardioand asking if I can up the Toprol Xl 25mg to 50. I figure he'll just say its not necessary. Go figure... I'm short 5'4" and thin(according to the neuro I need to gain weight) and my neuro says POTS is common in thin woman. I just figured I got the MVP from my dad. Maybe someday, we'll figure it out! At least, before the doctors do! ;; Karen

Last couple times I've had metabolic panel testing my aldosterone level is always 2,3,4x normal. The endocrinologist didn't think anything of it, but the cardio and the internist thought it meant something. I'm getting the usual "I don't know so I'll send you to another specialist" routine. A nephrologist (kidneys)this time! I eat lots of salt so that can't be the reason. It may not even be important but I'm just curious if anybody else knows they have high aldosterone and if it means anything. Now that I'm back on the Florinef and feeling better i'm wondering if i need to stop going to the doctor already! I'm sure my insurance company would like that too! Thanks and good night, Karen

Well,finally a doctor that doesn't try to send me to another specialist because they can't figure out what is wrong! I have a diagnosis of POTS and he actually knew ALOT about it. Some of the things I have read about on the DINET info. He said it is real common in thin women, for some reason. He told me besides taking the Florinef, basically avoid the things that make it worse. Easier said than done! He said things like the hot weather, getting the flu, extreme stress, ... will aggravate it. He said only 0.1mg Florinef is good and that most people have to take more. He said if you have to wait in line, which is likely, shift your weight around and don't stand in one spot. Even shake your legs around, I'm sure that will get some strange looks in the grocery store. Of course, he recommended drinking lots of fluids. And, if you feel faint, lay down if you can or sit with your head between your knees, or squat on the floor. Most of you probably already know this from the "what to avoid and what helps section of this DINET" but I thought I'd share it with everyone. Karen

Weird! I've had pain on my right side as long as I can remember! Usually, I feel it in my back but sometimes in my abdomen. I too, have been wondering whether all the POTS symptoms are related. Many years ago, they said I had endometriosis and that was causing the pain. Finally, I had a hysterectomy and was better for about 6 months. I always thought it was related to the kidneys. They did find a stone, but said it was too small to be causing problems. Went to an urologist and he lots of people have really small stones in their kidneys and don't even know it. Unless, they start to move into the ureter, shouldn't worry. I get an x-ray once/yr to check it hasn't grown or moved. Twice, I've been to the ER for classic kidney stone pain. Sudden excruciating pain on the right side! Tordol works like a charm. But, when they ultrasound, MRI, x-ray, blah,blah they only see that same small stone. My endocrinologist thinks it might be Acute Intermittent Porphyria.(AIP). Have to be tested. I swear it is related to the nausea and dizziness because when I press in that spot or have a bad pain day I instantly feel POTSY. I'm going to my endo and my neuro in October and have been planning on mentioning it. They'll probably think I'm more nuts than usual ;

Thank you for your support. The nurse doing the test also said I have vasovagal syncope or NCS. Glad to see I'm not alone. Am being referred to a neuro on the physician list from this site. Hopefully, that will provide answers. Thanks everyone, Karen

Hi, I'm about at the end of my rope. I thought today was going to be the big day and I was finally going to get a diagnosis of POTS. I saw a cardio at a teaching hospital which I figured should be the best. I had a tilt test a few weeks ago. I don't think my cardio knows much about POTS. I dragged my husband along thinking we were finally going to get some real info. Like someone said on this forum, the Tilt table test depends all on who interprets it. Basically, I think he thinks it is not a heart problem so he is referring me to a neuro. Because I asked! He thinks it is a false positive because I had to have the injection of isopen???(adrenaline)to cause me to faint and my BP remained pretty steady whole time. But, my HR wentup to 120 and suddenly dropped to 70. It says right on DINET info page that some doctors don't think you have to have orthostatic hypotension to have POTS. At least he put me on a low dose of BB(Toperul?). I begged him to please let me go back on the Florinef and he said he thinks the BB alone should help. He wants me to stay on it for a few weeks so he can see if it alone helps. If not, I can go back on Florinef too. Also, after the TTT I had gotten blood work drawn for the endo. Aldosterone and renin activity. I asked the lab whether the fact that I just had the tt test with injection of adrenaline would effect the results. They said no. So, I researched it tonight on the net when my aldosterone came back high, and the doc thought it was going to be low. Turns out, the aldosterone should go up alot after the TTT. And stays up for 45 minutes after! Scary!!! I suspected it might alter the results, why didn't the lab? Also researched alot on TTT and giving injection isn't considered a false positive as long as you have brachycardia, drop in BP, or both. If you put in search engine HUT false positive, there's a bunch! Sorry for the venting! Any suggestions on docs in my area? I'm not sure what to do next, except give up and accept maybe there IS nothing wrong with me.

Just got new contact lenses and they seem to hurt my eyes. I switched to Acuvue Hydraclear and they are a little better. After a few hours though, my eyes feel real dry and I just want to take them out. Maybe I just need to wear them longer and get used to them. Anybody else experience this?

I know what you mean about getting so used to the feeling you are going to faint that you sit or lay down before you actually do. That was what was different about the TTT. As soon as they tilted me, I started with those same feelings of nausea and felt restless because I wanted to lay down and couldn't. After the injection and I passed out, I woke up not remembering passing out in the first place and very dazed. After, a few minutes I felt "like I was coming back to life". I heard the nurse, "Are you ok?" I could nod in response. That is the way it typically happens. Usually when I lay down before fully passing out, I can't open my eyes, (my husband says my eyes twitch)but I can hear people talking and can respond by nodding. But after the adrenaline injection, I was totally out of it. I've never passed out and hid my head or anything, because I always know when it is coming and lay down. Just goes to show you, when your body is put in a position where you can't do that, things could be alot worse!

Thanks. That helps me alot!

Had a tilt table test yesterday. Not much fun, like everyone here warned! Was tilted for 30 minutes and just feeling plain yucky, but basically not much change in BP. Heart rate went up about 15bpm. After the injection of isoputerol(sp? imediately felt like I was going to vomit. That was the last thing I remember. When I woke up the cardio nurse told me it was a positve tilt. She said the HR went up to 120 then crashed to 70. She said the fact that I needed the injection to faint could mean a false postive. Is this true? I thought a "normal" person's nervous system is supposed to handle the adrenaline rush and compensate for it? I thought I heard most healthy people don't even pass out during the TTT? She also said it was probably NCS, not POTS. How do know the difference? See the cardio next week to discuss results. If anybody can shed some light on this, I'd appreciate it. Thanks!