ariella

Nina, To quote my gp. "oh, fun" please get better quick ariella

ditto, only for me it was 16 years ago when I was 19

wow, Ernie, I'm just catching up on reading posts and read your other post about your secret...I am so relieved to hear that you are home safe and sound. Thinking of you and saying a prayer. Ariella

hi Trying to figure out if this is being caused by dysautonomia, or the mestinon I am taking. I have no trouble at all falling asleep at night, but if I get woken up, I'll generally remain awake for hours (only to be exhausted the next day bringing the inevitable health crash) I'm not yet taking steroids. Could the mestinon be doing this? I take 60mg 5 times a day. thanks ariella

ah, back again, telephone cord kept coming out... Finnette, please don't apologize for the emails, when I'm not up to writing, I don't. Distraction is great. I have an appointment with the neuro in another two weeks, hoping for steroids, the condition is not being adequately managed for now. But always a pleasure to hear from you . Laura, I was really lucky that this time things eased up on their own (before I saw a neuro 5 hours later). They did nothing for me except have me rest under an air conditioning vent, and it recovered spontaneously enough to continue resting at home. My house is once again a disaster zone. Anyway, I had planned a surprise birthday party for my husband over the weekend, and I was laying there wondering what to do if I would still be in the hospital. Don't think that doctors' ignorance is limited to POTS. I found myself giving the resident a crash course in both. And I was innapropriately treated for myasthenic breathing issues this past summer. I am fortunate to still be alive.

thanks I'm so confused My heart rate was believe it or not only 74 laying down upon admission. (I went in because I was having severe trouble with my bulbar/respiratory muscles that didn't ease up after a nap, plus more generalized weakness i.e/ slow walking, unable to lift arms---in other words, exacerbation of myasthenia gravis. Lots of fun when POTS adds to the pot. I was presyncopal when I decided to go to the ER) Laura, do you have short pr intervals also without tachy? Guess it's time to see my cardiologist again. Still trying to find a pulmonologist. On a brighter note, I'm amazed how much medical terminology I've picked up in Hebrew since moving to Jerusalem. Gosh, with two relatively rare medical conditions, one develops a vocabulary after a while. Not bad for someone who averaged a C in biology in high school.

Hi again folks Just back from another episode of ER, for myasthenia symptoms that got out of hand and kicked off my POTS. This is already the third time that my ecg shows short pr intervals when I show up for breathing trouble. Years ago I was diagnosed--and then undiagnosed--as having Wolf Parkinson White Syndrome. If this was indeed a misdiagnosis, any ideas as to what might be causing this? thanks Ariella

Hi Traci, I'm a myasthenic too, so I found your post especially interesting. What I don't understand is the difference between the ganglionic acetycholine antibody and the regular achr test. I tested negative on the regular one, but positive on other diagnostic tests and am being treated for myasthenia. I take 60mg of mestinon 5 times a day. Right now I'm in a hole thanks to the flu shot a month ago. I imagine they will be adding prednisone and immunosuppresants in the near future. It would be interesting to see the results of a ganglionic achr test. I hope you will be feeling better soon. From my understanding, you are lucky to have an insurance carrier that approves plasmapheresis. I'd like to request it for myself, not sure what I'm going to be dealing with in terms of red tape. Ariella

Persephone, I LOVE mestinon. I'm sure it's also available in the UK, myasthenics take it. It worked better for me than the midodrine. Ariella

here to second right before my period (like the night before) and always 2-3 days after giving birth. The chills and shaking are severe, once in the hospital they took my bp during an episode and it was 70/40. Is this what it is? an adrenaline rush? I don't have all your symtoms, but some are very familiar. I get itching in the hands, tachy, headache and nausea. But the shaking and chills is so severe--I think of it as shock--I don't know if other symptoms are happening. And yes, it tires me out, and affects my muscles, but just about anything affects my muscles these days, I have a neuromuscular condition on top of the POTS. Ariella

sending love. Yesterday sounded pretty awful, I hope the rest of the testing is much easier and they figure out how to help you. Ariella

You've really been having a rough year Sending prayers and love Ariella PS I don't think this is helpful for your situation, but lidocaine is on the "likely to cause problems" list for me because of the myasthenia gravis.

Hi A bone scan may be very helpful to pinpoint exactly what's going on. I had one about a year ago with the dye injected, no problem (except that you have to drink a ton of water and I must have gone to the bathroom like 400 times). The dye from a CT scan is the one that's known to cause the worst reactions. This is a different dye. It was otherwise like an xray. No confining machine (they did the thoracic spine) good luck! Ariella

Hi Ernie, I'm glad they're finally taking your muscle issues seriously. I haven't (yet) had a muscle biopsy, but from my understanding they do it with a local in the heel of the foot. Doesn't sound like fun, but on a whole people usually complain more about having to do emg's. I remember reading that it may leave some very localized numbness in the immediate area. It should go easy for you! Ariella

Jan, In my thoughts in prayers. They say that real joy and laughter, however that's possible in such a hard situation, actually prolongs life, somehow sends good vibes that keeps the body going longer. Doctors are often surprised by their patients' endurance. Ariella

Lisa, another couple of possibilities: I have very dry eyes, either related to dysautonomia or to some as yet unidentified autoimmune disease. Dysautonomia can alter tear production, which can cause some serious vision problem. My opthomologist is on my case big time about using artificial tears. Also, don't know if it was related to dysautonomia or not, but I had elevated pressure in my eyes for a nice chunk of time. Unusual for someone only 35 years old. Please see a doctor. Ariella

Hi Anyone here suffer from both or see a correlation? Anyone mistakenly evaluated as having ADD and it turned out to be POTS in an early stage? Also, I vaguely remember someone here writing that Strattera, which is given for ADD somehow helps POTS? My 13 year old daughter is now being evaluated. Thanks Ariella

Hi Forget about this moron, and spend the energy on feeling good about yourself for undetaking this whole Oxford thing to begin with, despite all the hardship. What you're doing for yourself just keeps building your character, and if this idiot doesn't grow up he will never get any real, meaningful satisfaction out of life. Pretty sad. Hope your housing situation improves quickly! You are very brave. Ariella

this is interesting to me... I don't know the connection between the 2 diseases, but I have dysautonomia plus myasthenia gravis (or myasthenia with dysautonomia ) and mestinon is prescribed for both conditions. Now I'm reading that plasma exchange will work for both as well?? Many of us here on dinet have muscle fatigue. I'm wondering if there's some connection? Anyway, I found this interesting Ariella

To BuddyLeesWife Ariella (or sky-blue for laying on our back looking up, or black for passing out, grey for just feeling fuzzy...)

Hi Dana, Welcome If I'm not mistaken, dysautonomia brought on by a virus has a better prognosis, and is more likely to go into remission. OT? Evie mentioned exercise. My doctor told me the same. I take walks every day, rain or shine. I feel much sicker if I don't. But I'm able to do so only while medicated. Did the doctor suggest a medication? I "weathered it" for about 10 years before I was treated. The doctors attitude years ago was that it's just an annoyance, not dangerous, so why treat. I am much more functional with medication. Good luck! Ariella

Dana, I can really relate to the frustration. I'll be doing fairly well and functioning, and then all of a sudden need to stop what I'm doing. Like I start cooking dinnner and then don't even have the energy to put it on the table, let alone sit at the table. My dizziness improved with medication. At first I was taking midodrine, but now am taking mestinon and as long as I don't overdo or eat too much or eat things complex (like something with a lot of carbs, or something with too much sugar), the dizziness usually doesn't come on. Hope this helps. Ariella

I know the last thing you want right now is another person second guessing a diagnosis that was exhausting and draining to both you and Morgan, but did the doctors rule out a pituitary tumor? I remember her mentioning that something in that direction was abnormal. We have a friend who was told for a year that his disorder was psychogenic, and was placed on psychiatric medication which even helped somewhat, but later found a tumor that could have taken his life. His symptoms were similar to Morgan's. Apologies for exhausting the both of you further, we all just want to see her well. I am sure she is grateful to be married to such a supportive loving husband. Ariella

Tracy, Dizzy Dame's got it right- people who bully sick people are suffering miserable lives. Good for you for getting out there and doing something fun. ps- you would never know by looking at the mess in my house right now, but interior design is one of my favorite hobbies. Ariella

Back from the ENT--He said that external ear infections are a skin disorder, nothing to do with POTS directly, but maybe related to an autoimmune diease which is also bringing out the POTS. Middle ear infections may be another story. Ariella