futurehope

I'm sorry about the loss of your dog. I just went through that myself, this year. I'm in the middle of weight loss myself, and my family tends to have coronary artery disease and high blood pressure, and diabetes so I'll tell you what I'm doing. I also do not drink milkshakes with sugar in them. I've been getting the Atkins shake, both the liquid form and the powder form. The powder you can mix with water or milk. My gastro guy is recommending the regular (full fat) milk to drink. This does seem hard on my stomach, though. There are also shakes with the brandname of "Choice" (I think this is sugar free) and Boost Plus (high calorie) or Boost protein both of which have sugar. I will be trying the Atkins for now. If I keep dropping weight, I guess I'll need to see a nutritionist. I wonder if it is covered by insurance? Also, in the meantime, I've seen my gastro guy and I have an appointment with the endocrinologist to rule out causes of the weight loss. I try to put food in my mouth as often as I can remember to. This includes whole grain cereal with milk and fruit or luncheon meat (turkey) on bread. I don't do well with fats. BTW, my gastroenterologist recommended Creon 20, enzymes, for digestion. He also recommended them for my mother. We both notice less churning in our stomachs after using them with meals. Also, you may need the lactose-intolerance milk if you mix milk into your shakes (if you tend to get bloating and problems from milk products). Anyone else on prescription enzymes, BTW? I'm kind of curious about this as this is my third gastro guy, and he is the first one to recommend enzymes.

I always get the flu shot, even with my POTS problem. I just got the flu vaccine on Monday and I'm glad I did (with the shortage and all).

Dawna, I had read a bit on the internet about MG, and it can go into remission, and I guess, in some people, it can "go away", but I don't know if that means "forever" or what? Also, when you have a disease and you are not displaying symptoms, my doctor used the word "subclinical", meaning, you are not displaying the outward signs.

I'm much more intolerant since having the strong symptoms of POTS. I will not take anything that makes me feel worse than I already am (unless it's a matter of life and death).

Dawna, I don't know what to say other than I, myself, do not experience any weakness of any kind, except that my entire body tires easily, but that's it. So, for now, since there is no muscle weakness showing that I can see, I suppose I won't be doing anything. Remember, this entire search which culminated in the repetitive nerve stimulation was because of an elevated ACHR antibody titer. Now, if this blood test means anything and can help shed some light on all my POTS symptoms, that would be good. But it looks like my doctor is stopping at the RNS and he has decided for now not to label me with myathenia gravis.

Last Wednesday, or was it Tuesday, when I got to the testing I found out I was only to have a repetitive nerve stimulation (RNS) test, not the EMG test. It turned out normally. I asked my doctor what to do now? since my AchR antibody titer was elevated and this could be indicative of myasthenia gravis. The doctor said, as long as I'm not displaying any muscle weakness, he was not going to do anything else. And I do NOT have a diagnosis of myasthenia gravis, according to him, despite my blood test results. As usual, my body performs like a mystery wrapped in an enigma. Thanks for asking.

Etoly, I would think that it would be near impossible for a primary care physician to have the knowledge base necessary to treat the likes of us. I, too, go to Dr. Khurana and I've asked him to recommend specialists in the areas of medicine where I am most affected, namely, endocrinology, cardiology, and gastroenterology. I do not expect my primary care physician to know enough about the individual aspects of my physiology as they relate to POTS, though I DO have a PCP in Baltimore who has heard of POTS. That's a start. But since POTS can affect so many different aspects of our bodies, how COULD a PCP possibly do anything but hold onto the notes from everyone else? Even Dr. Khurana is aware that he does not have the knowledge necessary to treat the endocrine aspect of this problem, or the cariological aspect, etc., so how could a PCP do it with even less knowledge? Anyway, from what I've read on this forum, I thought the best bet would be to have the physician who is treating you for POTS (Dr. Khurana, in this case) recommend a colleague of his that understands POTS who could help you with the specifics of a particular body system. That way, the recommended doctor could confer with Dr. Khurana, get his input, is aware of your POTS diagnosis and then both of them, together, can work for your good (you hope). For example, when you next see Dr. Khurana, if you are having gastro problems, you can tell him that and ask HIM for a recommndation for a gastro person who understands somewhat about POTS.

Yep, I totally understand. I have asked my neurologist and endocrinologist both why? My endo said it could be a lot of different things so I don't have a clue. It's very upsetting. (Though I'm secretly suspicious that the reason is because I have low or no growth hormone. I found out via a certain endo test. I think my hair loss has a hormonal basis. But that's just my guess. The doctor wouldn't commit to saying that.)

Dawna, If you don't mind my asking, how would I know that the person doing my EMG this Tuesday) is any good? Are you saying that from the EMG, they determined that they should do a biopsy for mitochondrial disease, and you are awaiting the results of the test for mitochondrial disease? Just curious since I have my EMG this Tuesday and really do not know what to expect.

Dancing Light, I know exactly what you are describing since I have had many bouts. First off, of course, you rule out bladder infection (as said above). My diagnosis is interstitial cystitis. Since I have had IC for many years now, I will tell you what works for discomfort and what makes its worse for me. What makes it worse: sex (bummer), acid foods such as spaghetti sauce, vinegar, there's an entire list, chocolate (bummer), alcohol, yogurt, can't remember entire list. What works for temporary relief: those bladder analgesics (pain killers) used for a bladder infection, drinking 1/2 tsp baking soda in 1/2 glass of water (removes the acid in your urine), wear looser clothing, remove certain foods from the diet that "burn" down there. Hope that helps.

I made my doctor do a lot of testing on me because I wanted to see if a CAUSE could be found for my dysautonomia. In the course of testing for autoimmune stuff, my achr test came back elevated. This is a blood test for antibodies to acetylcholine receptors. This test can be a marker for myasthenia gravis. My doctor was so surprised, since I display no symptoms for MG that he knows of, that he had the test repeated and it came out even higher. Thus, I will be getting an EMG test this Tuesday to test for muscle strength. If I were you, I would WANT to know more if at all possible.

Did anyone here have the autoimmunity test called Achr (acetylcholine receptor antibody titer)? How did you do?

Remeron was great for sleeping, but it actually brought on my POTS to the point that I realized something was wrong. I had to use a cane while I was on it because it made me so dizzy and I gained weight. The weight gain is what made me quit, though I must say, that after 6 mos, the other side effects diminished.

Danelle, If it makes you feel any better (and I hope it does), I just got my disability and NO doctor was willing to write anything about me at all. My neurologist would NOT fill in the functional capacity form my lawyer suggested. I went through the most unimaginable torment for a year, stress beyond belief, you know what I mean, laying there at night wondering what would happen. I had even called the lawyer a few times to quit pursuing SSDI since I figured it was hopeless. My husband was discouraging me by saying I would never get it. It was a really stressful year for me. But, I did get the SSDI. I was so convinced that I wouldn't, that I still am trying to believe it. My doctors never contributed anything above and beyond their notes on my case (unless there was some phone calling that I do not know about between SS and my doctor). I finally kept my sanity by reminding myself that I was willing to stand in front of a judge if I had to, and look him in the eye and tell him MYSELF that I was unable to work, and that even if he didn't believe me, I wanted to have the opportunity so he would become more aware of people like us. I also had a work history, and I displayed my inability to continue by going down to three days a week. That probably helped. Also, I had notes from my pastor and my mother about how little I was able to do. I really empathize with what you are going through. It's not easy.

Congratulations! It my take 30 - 60 days to see any money. (I just got SSDI also.) I know how stressful it is to wait through the entire process, but once you get it, it's worth it. For those of you going through this, just remind yourself that "nothing ventured is nothing gained." If you never try, you never will know.

Momtoguiliana, Just today I'm finding out that I have an increased blood titer to Achr receptor antibodies. What is really interesting to me is this. I am the one that called for all the immune testing. I told my doctor I wanted to find a cause for my POTS. He called for bloodwork involving all sorts of tests, one of which was an immune panel taken at Mayo clinic. (I think there may be a thread on here on which I mentioned this Mayo test. Or maybe it was on NDRF. I can't remember.) They did NOT run one of the tests my doctor had wanted, which was to test for antibodies to GANGLIONIC acetylcholine receptors. So, actually the test that WAS taken (which had NOT been asked for), was a test for antibodies to the receptors in the muscles, not the receptors in the ganglions. In any event, my doctor was surprised to find the blood test showing an elevated response since he had not noticed clinical signs of myasthenia gravis in me (which the achr receptor antibody tests looks for). The achr receptor antibody test was then repeated, and it was elevated again. This was all a surprise to my doctor who will now get a repetitive nerve stimulation test (EMG) run on me to see if I indeed have a diagnosis of myasthenia gravis. All interesting stuff. Remember, myasthenia gravis was not even on my doctor's mind.

I would also try stopping the licorice root. Sometimes the herbs and stuff are made with ingredients that give you headaches. I know I can't take valerian root or the melatonin brand. They gave me ehadaches.

FYI, my neurologist, who's been seeing POTS patients for many years, told me today that even though POTS people test positive on the TTT, though that is one of the things we have in common, there are MANY symptoms we do NOT have in common. We are a heterogenious group of patients. As a matter of fact, even though POTS presents as a symptom, we may all have DIFFERENT things wrong or different things that may be causing our POTS. POTS (this is me talking) is a symptom. Eventually, when this is all sorted out, we may find many different causes, and many different treatments.

Michelle, I'm totally in agreement with you. I'm a bit disgusted with the Nexium. I used to take Prilosec. I pop a 150 mg zantac as well on occasion. I find that after years of doing this, that and the other, the above-mentioned pills are not DOING that much. And I was starting to wonder why I was taking them at all - in HOPES that they'd work? That's a dumb reason. Recently, I made the decision on my own to stop the Nexium and cut way back on the zantac. After all, they're not doing that much. I tend to use the baking soda because it works immediately. I may have to do it a few times, but, hey, I need the salt anyway, and the baking soda HELPS my stomach instead of making it worse. Like I said, I stumbled on this by accident, and I'm really glad someone else noticed this easy solution to more salt in the diet. Glad I could share something that works. P.S. While you're at it, if you have stomach problems (I don't know if you do), you can also buy DGL (I use the kind with sugar, not fake sugar) and you can take two of these before each meal to coat the stomach. Since the DGL is licorice, they tend to raise BP as well (even though they supposedly have the blood-pressure raising component removed) The combo of baking soda and the DGL are great ways to raise BP. No side effects either.

EM, Can you paste the link to Amazon for the book MVPS/Dysautonomia Survival Guide? I can't find it on Amazon or on Barnes and Noble. Thanks.

Forget about the idea that the heart problems resolve at menopause. Where do the doctors get their ideas from?! They didn't ask me!

Danelle, Dumb question, but have you seen a cardiologist about your problems, and discussed the fact that you have had atrial fibrillation? Just wondering. My elderly Mom (79 yo) had atrial fib (felt really bad when it was happening) and the medical personnel took it quite seriously. I'm just wondering why this is treated differently in young folks than it is in elderly people? I do not know much about heart problems so I do not understand?!

Thanks. I might buy one. My husband is hogging my upper arm BP monitor.

Thanks, EM. I'm going to assume that you mean "upper arm" cuff? You said you own a "wrist" cuff. I never heard of that.

Earthmother, What did you use to take your BP readings for your doctor? I have a self-inflating OMRON HEM-711. When I called the Omron corporation, they said the only BP reading that is deemed to be accurate is with feet flat on the floor, sitting, with arm resting on a table. Does someone else do your BP for you with a manual cuff? Thanks.