futurehope

I've been frequenting this forum for a while and I just want to share with you something I recently found out. As it turns out, in my quest for answers, my doctor had ordered a bunch of bloodwork (something called a paraneoplastic antibody panel, I think) to test for autonimmune disorders. I pushed for this after finding out something on this forum. I came back with a positive in my blood for myasthenia gravis - another medical condition. Why am I telling you all this? Because, I'm just finding out from my new "myasthenia gravis" forum, that for MG patients, Magnesium (in concentrated form) makes them worse. Now, I had no idea. This is news to me. I had tried Mg supplements at the beginning of my POTS Dx. But I won't be using them now.

Ben uk, I doubt older people frequent internet forums as much as younger folks. But, I had worked as a computer programmer so the computer was not new to me. Therefore, I'm on the internet frequently. Also, I'm 54 yo - diagnosed at 51.

Can somebody in the know post a link to the "total body" machine you're all referring to? I'm interested. Thanks.

Deb, It sounds to me like this doctor does not understand POTS very well. That being said, you will have to determine what it is you are capable of doing. I suggest doing some stretches and possibly light weights on the floor. I also suggest that you go easy on any aerobics exercise you do since you do not know how high your heartrate goes (if you are not wearing a HR monitor). That may mean only a very short walk to begin with. Consult again with the doctor. Is this doctor familiar with POTS or NCS? My neurologist suggested that I do not exercise to the point of making my self sick.

Melissa, Interesting. Sadly enough. Dr. K called for the paraneoplastic antibody panel to be done for me so that I could have that antibody titer to ganglionic achr receptors done (that your article refers to). Mayo ran my blood though but did not do my test correctly. I wound up getting a titer done for achr antibodies - the same one they do to test for myasthenia gravis. I give up. HOW did you get your dr. to do the test properly?

I've asked my gastro doc on more than one occcasion, Is GERD a disease of the ANS (the pyloric sphincter doesn't close properly) or is it a disease of function (my hiatal hernia pulling the sphincter open?) His answer, "it could be both." In other words, in my case, I do have a hiatal hernia which could widen the opening in the sphincter making it more difficult to close properly. But obviously, to me anyway, there are certain situations and foods that affect the working of this valve. I think it is both. I was told that the valves in my leg veins don't work that great and that is why I have varicous veins (the veins that are ugly and are obvious). Maybe many valves in my body have a problem?! It would be interesting to see how many others on here have a GERD problem?

Oi Vey, Check out page 2 of this prior long post: (I hope I have the link correct): http://dinet.ipbhost.com/index.php?showtopic=571&st=15 It discusses renin/ aldosterone abnormalities. I hope the doctors have access to the internet because if they don't know what is going on, at least they can do searches to find whatever is written out there, like some people do on these forums (just kidding)

Thank you so much for posting this. I pray that this disabling condition will get more and more of the attention it deserves.

ar1281a, My endocrinologist knows my POTS doctor and vice versa. I did okay on my cosyntropin stimulation test but did not do okay on the insulin tolerance test (which tests the adrenal reaction to stress). See the following prior thread: http://dinet.ipbhost.com/index.php?showtopic=2260&hl=adrenal As for which came first, the POTS or the poor adrenal reaction, the doctor cannot say. He's working with giving supplemental adrenal hormone (low dose) to some of his POTS patients. I could not take the hormone. The heartburn was too bad. For some of his patients that do take hydrocortisone, the endrinologist has said they are doing better.

Ditto, the biotin suggestion. My mother was told to take it twice a day by a dermatologist for her hair loss (due to a physical ailment).

Two thoughts. I get a pressure, sore, sensitivity in my gut (around the naval) when I ingest milk or milk products, though I have NOT tested positive for milk allergy. Anything with pseudoephedrine (or the medications used to unstuff the nose or constrict blood vessels) gives me a tight feeling in my gut like someone is sitting on me. Very uncomfortable. Good luck in finding answers. When it's not foods or medications, it's time to ask a doctor.

cbahagrl, Dr. Khurana is very nice. He's my doctor. When is your visit? I'm going at the end of this month. It will be okay. Try not to be scared. You've found a doctor who understands.

Gaylep, At NIH (National Institutes of Health) in Bethesda, MD, there is a department of neurocardiology and Dr. Goldstein's title is he's a neurocardiologist. I saw him there when he was accepting patients for his POTS study. Unfortunately, he has discontinued accepting patients for a week-long stay for numerous tests. Also, he did not treat, he just gave you more info on your specific problem. Where are his clones?

I know what you are decribing as I used to get that at my (sitting) job before I knew what was the matter with me. It felt like I was passing out for a second. Then the adrenaline rush would start soon after to compensate for the change in blood pressure. I never could figure out what was going on with me and I never fainted. I just figured that I always had weird symptoms and I always would. I've spent most of my life having weird symptoms that nobody else in my family understood. After a while, I quit talking about most of them and I decided that I was a neurotic, anxious person, for lack of a better explanation. (Who wouldn't be neurotic with their body behaving in an unexplainable fashion?) I'm really grateful for this forum and to know there are others out there who live with diverse symptoms on a routine basis. Anyhow, I think that any vertical stationary posture, including sitting, causes symptoms in me. Fun, huh?

Julie, I found the klonopin very effective. I really enjoyed how I felt and how my ability to be upright without symptoms improved while on it. I only needed .5 mg, which I took at night before bed, though I had been given 1 mg (and sometimes cut it in half). It definitely helped me get to sleep and kept me from getting nervous. Only one drawback for me. It stopped being effective after about 1 month and I needed to raise the dose to get the same effect. I did raise the dose ONCE, to 1 mg/day, but decided that I did not want to keep doing that every few weeks, so I quit taking it when the 1 mg dose became ineffective. It took a good two weeks for me to stop being irritable and to stop having insomnia once I discontinued the pill. That being said, it's great to have the stuff around the house to use when I'm particularly "wound up". I just cannot keep taking it because it loses its effectiveness.

Also, I happen to be reading biographies of women who lived in the late 1700's to the early 1800's, and we think we have problems? Let me tell you. Those poor folks had no clue about anything. It seems that way to me anyway. Back then, if you felt bad or got sick, good luck.. or maybe they had an herb or folk remedy or bled you with leeches. Chances are you were down for the count for weeks or months. In any event, I think we've come to expect that modern science (i.e. medicine) has all the answers. And the truth is, we do have more answers than we used to but they do not have all the answers for us. Any time you feel down about the fact that you are having symptoms and don't have the answers, remember those poor folks back in the 1800's. Obviously, some of them survived or we wouldn't be here. We'll survive too. We just have to realize that we won't feel good very often and we won't know why or what to do about it. Welcome to the land of the living!

I always get a flu shot and have been for about 30 years or more. I did want to add, though, that last year I got the shot at the beginning of October, and I came down with the flu at the end of February. I knew it was the flu by the fever and how quickly it came on. I called my doctor and was prescribed Amantidine for 5 days to help keep it from getting too bad. There is also something called Tamiflu. Either one can be used at the beginning of the illness to shorten it (hopefully). It still took 5 days for me to get over the fever and I can honestly say that I have YET to get back to the pre-flu stamina I had before I was ill. That was 8 months ago. I just don't recover very well.

I'm very happy for you. There's nothing like carrying a baby (or babies) inside of you. It's great! God's blessings to you.

Ditto what everyone else said. And in addition, I have had an Insulin Tolerance Test given by my endocrinologist which showed that I have a poor response to stressors. Translation, according to the endo, is that when I'm sick I may need additional hydrocortisone since illness is a "stressor". That certainly explains why it takes me a very long time to recover from any bad bout of illness.

Paige, Good thoughts to you. And I want you to realize that my mother had to be admitted to the hospital at one time for depression that we all feel was brought on by the beta blockers she had been taking. BB's depress me as well. I'm sure they will treat you very well at the hospital and they will come up with a plan to get you feeling better soon. You did the right thing. God's grace to you!

Cute dog (in your (avatar) picture), Emily

Hay y'all I've sent TWO email to referrals@lymediseaseassociation.org. No response. Do any of you know a working email from which I can get names of lyme literate doctors? Thanks.

Also, when my Mom had just had surgery and she was weak, you couldn't see anything unusual. We used the wheelchairs everywhere we went. She is obviously older, of course. What I am trying to say is, what if you had been recovering from surgery? That's an invisible infirmity, but an infirmity nonetheless. The Walmart person just needs education, that's all.

I'm with Morgan. If I feel worse than when I started, forget it. Of course that basically means that I feel bad fairly frequently. But I refuse to feel worse than I already do. It can really be frustrating trying to live my handicapped life, though. I totally understand.

I just called the IRS. On line 20A of the 1040, you list your SS income. On line 20B, using a worksheet (which is on page 25 of the 1040 instruction manual, so I was told), you determine HOW MUCH of the SS income is taxable. It has to do with how much total income there is in the household, I think. That first check is the biggest since it goes back a ways. Your lawyer probably told you already how much he will get.