ariella

Alicia, your experience at 60 sounds like mine this morning. Can't lower the mestinon dose, if anything it is likely to get slowly raised. Maybe I could lower the midodrine. I'll save it for a day when I could afford to feel a little beaten up. Not tomorrow Steph, Also hoping the mestinon just takes care of the POTS on its own. This month has been to precarious to play around. Good news is that it seems to be starting to help for the myasthenia symptoms. Was able to not use my cane for part of my walk today

Dennis, Just to add a "if misery loves company..."well, you'll find a lot of company here. And great company we are, just wish we'd all meet at some nice coffee shop instead. Welcome I also get freezing extremities, and my body gets very cold. Even in summer. Basically it seems that if I get chilled by anything small, even air conditioning, my body doesn't know what to do with that info, and gets cold to the end. And the opposite is also true. Doc seemed to just think it's par for the course. Not treating the coldness specifically. You will probably experience better periods of time, too. Hopefully someone will come along with some better advice. Ariella

dizzy, Thought I'd chime in just to second what Steph wrote about mestinon and fatigue/weakness. I take mestinon for suspected myasthenia gravis, not for POTS. I have been told that mestinon can first cause muscle weakness in those who take it who don't have myasthenia. Or in those who overdose. Even for myasthenics, correct dosing is often a personal thing with a lot of trial and error, and myasthenics will adjust their dose even daily, based on severity of symptoms. As far as stomach issues, that's considered standard with nearly anyone on mestinon. I was advised to ALWAYS take with food. Someone suggested Saltines. I had some rice cakes with it this morning. So far so good. If it's helping your POTS, I would try to have patience and play with dosage. I'm hoping it will do something for my POTS as well, had to be taken off of midodrine because for some reason didn't interact well with the mestinon. Hope this helps. Ariella

hi I started mestinon yesterday for suspected myasthenia gravis. 60mg, 3x/day. It hasn't yet noticably helped my breathing, but did get rid of the miserable muscle cramps that I get at night. Problem is that I took my first dose of midodrine this morning since starting mestinon, about an hour after taking mestinon. 20 minutes later, had a horrible reaction, mostly shaky potsy stuff, with some trouble speaking and my mouth felt kind of funny. PCP told me to stop the midodrine for now. Anyone warned of overlap? Did they just enhance eachother to the point of overload? For now, waiting it out until the drug is out of my system. Any idea what happened? Ariella

hi I've been unofficially told that I have peripheral neuropathy, I get severe burning sensations on the soles of my feet, and some itching in the palms of my hands. It is not constant and wasn't going on when they did my EMG. BTW, I did the EMG on day that I also had some kind of virus or mild flu, was feeling feverish, so it increased the pain. The EMG did not show anything up, but I was asymptomatic for neuropathy at the time. They did the test as part of a series to evaluate a neuromuscular issue. Endocrinologist still thinks it's a no-brainer that I have some peripheral neuropathy. I do not take anything for it because it's relatively mild and not constant. Good luck! (it helps to try and focus on something else during the test and keep telling yourself that it won't last forever) Ariella

Hi Neuro today prescribed mestinon for suspected neuromuscular weakness and breathing problems. I am currently on midodrine. Will of course check with pcp tomorrow (he anyway has to write out the script for it to be covered by my insurance b/c neuro is out of network). Those of you who now take mestinon, have you been told to stop taking midodrine (proamitine)? Do the 2 interact well? I imagine there may be some overlap? thanks ariella

Carmen, Same thing happened in our home, my 10 yr old daughter complains of dizziness, headaches, having a hard time concentrating in school, etc. She was sent for an echo beacause the doctor heard a murmur. Although with my history, she is high risk, the pediatrician felt that unless something actually threatening shows now, and as long as she is functioning, it's not worth labeling a child with dysautonomia. The echo showed normal, if we want we can do a holter monitor. For now leaving things as is, not sure if we're doing the right thing. I did speak to homeroom teacher, and will do the same this coming year. Don't know if I'm doing the right thing, she has a hard time concentrating in class. For now just trying to keep her on my "dysautonomia diet" as much as possible. With all I've been going through, I always say that I'm grateful it's me and not my child. So I can understand the space you're in right now. Hoping to hear good news, ariella

Hi Ernie, Sorry about your appointment. My 2 cents is that the problem with relying on separate specialists to manage care is that there is no one coordinating, and no one communicating, often causing choppy, inadequate, inconsistant care. Maybe it's for the best that you have these specialist appointments before Dr. Grubb, so he can manage the whole picture more effectively. BTW, I find the whole process of going to doctors a big interfence in my life, and really stressful, especially when paying out of pocket on a limited budget (doing the same now), cancellations just add to the misery and frustration. When these things happen to me, I usually wander around the house saying things like "I bet if I spent the money on a new guitar instead of this garbage, I'd be feeling a lot better". With you, Ariella

Morgan, Ya know, after having 3 ridiculous ER visits for neuromuscular shortness of breath, absolutely ridiculous and scary and dangerous experiences, this month, I mean, your story made me laugh in some sick kind of way, it really struck home. I am sometimes fearful to tell my ER stories to friends, lest they think I'm making it all up. Sometimes I imagine I'm watching a sitcom, but somehow I got elected for the part..This was totally irresponsible, you have objective findings, a medical history with aggressive treatment...You know that they wrote tension headache only because your other condition, the only one they were looking at, isn't politically correct to write--BORN FEMALE. Time to get a "what to do for Morgan just in case letter" from someone with fancy stationary. Hugs ariella

hi Nina Agree with Carmen about the walking. It's the only form of exercise that doesn't send me into bed. I don't have your EDS issues, so I don't know if it would be beneficial to you, but I do have pain which is probably muscular in origin, it feels like someone poured lead under my skin. Heavy and painful. I make a point of taking 3 short walks a day, and it seems to be helping overall. I also make a point of walking outside, as opposed to being in the house on a treadmill. Far more distraction outside, which helps for the pain as well as for keeping me otherwise cheerful. Do you have an air-conditioned mall close by? I haven't been posting much the last few weeks, but have been checking in to read when I can. It seems you have been going through a more intense time than usual pain-wise? Wishing you some relief Ariella

Chrissy, I have exactly the same experience, and no it's not caused by panic, although after a while struggling to breathe does cause a reasonable amount of anxiety (and sets off my POTS symptoms as well). It used to be infrequent and mild, but lately (10 years later) it is much more extreme, sometimes lasting for days. I'm being evaluated for a neuromuscular issue. I am told that in some conditions, pulse oxygen will be normal for a while, because you are getting oxygen, just working hard to get it. A few minutes of feeling like you have to force air into your lungs is unlikely to send your pulse oxygen down. But it's real scary. A lot of people have shortness of breath with dysautonomia, but to be sure it's a good idea to discuss it with your neuro, and see a competant pulmonologist. Hope this was helpful, often you have to just trust your gut, if you're not comfortable with a medical professional's take on a situation, it's your right to seek further. Good luck! ariella

Hi, I imagine you're post surgery now, sending best healing wishes your way. I know you still have a lot ahead of you. By your post it sounds like you're going in with faith and positive attitude, your recovery should be swift. Ariella

Mary, wow You must feel so overwhelmed. Wishing you and you family the best possible outcome. How is Marissa doing? Ariella

Sue Sending prayers your way. Blessing you that your neice should recover and have much delight from her children. Ariella

Wishing you a smooth move, and lots of health and happiness in your new home. Ariella

Persephone, If your heartrate goes down to 30, YOU MUST GET MEDICAL ATTENTION. I know the doctors brushed you off. I learned something yesterday from my GP. I've been having trouble getting adequate care for some muscular breathing issues. He told me that the unwritten rule is that if a patient continuously shows up in the ER with the same complaint, THEY MUST TREAT YOU. 30 is dangerously low, as Melissa just pointed out, she was hospitalized extensively for it. It's hard not to be intimidated. Because you are young, they don't take it as seriously, you don't fit a cardiological stereotype. Stand strong! We're here for you! Ariella

Dizzygirl, Not feeling well enough right now to write all that's on my mind, (was sent to the ER again today for breathing issues, and I'm knocked out.) But I didn't want this to go unanswered. It is such a horrible feeling for the people who are supposed to be our anchor not validate or support us, or worse, put us down. It probably feels worse to you right now than the disease itself. It's a kind of betrayal. It is so hard. It is important for your boyfriend to know how his attitude is affecting you, this can't be good for your relationship. You guys need to talk, at a time you feel well enough to discuss it in a less emotional kind of way. Otherwise, you are going to continue feeling taken advantage of, and that's a horrible space to occupy. Sending a cyberhug. Ariella

Here to add a me too. My pulse goes low even more often than I get tachycardia, fluctuates wildly along with my blood pressure. When I feel my worst, my pulse is usually in the upper 40's. and my blood pressure goes up and down 30 points in each direction for a while. Happens most when I'm tired. Very uncomfortable. I lay in bed and drink until it passes.

Hi Rachel Avais gave great advice, just wanted to add that maybe your doctor can write a letter of request for you to get a bulkhead. Make sure though that it's understood frome the letter that you may fly. Everyone is scared of being sued these days. Good trip! Ariella

Dizzygirl, Your story is unbelievable. Something similar happened to someone I know who was in real respiratory distress, but in her case, she was the one who demanded to see a psychiatrist because they told her it was just stress. They hadn't picked up the resp distress b/c it was caused by neuromuscular disease, which presents differently and shows different signs (for examlple, pulse oxygen will usually be normal if patient is conscious). This psychiatrist also saved her life and had her sent to the ICU. But your story takes the prize. I know, I know, you would rather not have the prize. It's very frightening to know that even when we present objective data, we are not given proper treatment.

Persephone, sorry you're dealing with this. Usually the worst I get from my doctors is that they don't know, therefore won't treat. However, did have (not related to POTS, neuromuscular issue) breathing distress Friday night, two hours of air hunger set off POTS symptoms, when the ambulance people saw my tachy and shaking, they at first didn't want to take me to the hospital, said it just looks like anxiety. When I told them that I'm being evaluated for a life-threatening neuromuscular condition, they finally agreed. Pulse oxygen went down to 90 in ambulance (so much for anxiety). Home now, not out of the woods, still struggling to breathe. Ariella

Hi Ernie, Just want to wish you well. I'm hoping that it will be helpful to be see by someone who understands this disease. Will the Canadian medical system follow up on what he orders for you? BTW, if he gives you some Mestinon candy and you prefer to pass, please mail some this way, I've been begging them over here, and no one but me seems to have heard that it's being used for dysautonomia, curious to see if it would help my muscle weakness...Doctors very wary that my info comes from my "internet friends". Wishing you an enjoyable trip! Ariella

Hi Linda, sorry you're in pain. I've had a high blood bilirubin count with soreness on the right side for some time. I recall only 2 blood tests in the last few years...and there have been many..that were in normal range. Once urobiliogen was positive in the urine within this time period. With all else going on, nobody felt it was significant enough to follow up. But then my levels were not as high as they would have been in acute disease (I was told that serum bilirubin has to be grossly out of range- like over 8 times the upper value---before it's considered significant) I imagine your serum bilirubin is pretty high to be showing also in urine. Happy to hear that your doctor is getting testing moving for you. Hoping to hear good news, keep us posted! Ariella

Danelle, You have me laughing about the veins. The insides of my elbows look like I've been injecting myself with something intravenously. They also have a hard time getting the vein, and always use a childrens size needle! Let us know how it goes.

hi Danelle, Want to second Nina's view on ANA. Although it can indicate some serious autoimmune diseases, it is not used as a definitive diagnostic test on its own. Some people who feel healthy have an elevated ANA from time to time. The Rheumy, if he is responsible, will send you for a slew of rheumy-antibody-blood tests. Unless those show something up, you may very well be told to go home and not be concerned. I've had a positive ANA with different patterns on and off for years. Interestingly, it has been negative the last 3 years, when I've been at my worst. I know, it doesn't make sense. If you are having severe migraines and a positive ANA, the neuro may be interested to know about it. Been there, wishing you some peace of mind, Ariella