I was just wondering if any of you were give the IAIYH diagosis as i was.. I know when i had severe palpitations and my heart started racing away like a train going down hill that i should seek medical attention.. since it stopped fairly quickly i waited till the next day and my internest ordered an electro cardiogram.. HE told me all was well (his ekg should be so good and i just needed to learn to relax! basically its all in your head..Even though id been suffering from chronic muscle pain for several years at this time..of course by this time i was anxious and depressed and it kinda made sense.. so it really kind of put me off about getting a real diagnosis till just a few months ago.. funny thing is that when i read about andersen tawil it explained every thing about me.. even the quirky things like becomeing extremely tired (actually weakness and partial paralysis) why i hated going to the dentist and why my blood pressure would go sky high when i went to the dentist..having had numerous dental visits while not appropriately anesthetised.. it explained why my stomach bloated and became hard when my gall bladder was sick.. in my family one of the symptoms that we have is problems with glands and ducts in the endo crine system..my brother has had several severe bouts of pancreatitis could be related to the spinchter of oddi that serves as a regulatory duct for enzyme production and dispersal.. my self when my gall bladder was diagnosed there were no stones even though i was so sick.. Malfunction of the bileduct? ducts do contain muscle tissue!! MY sisters daughter was born with non functioning thyroid gland and she has been on thyroid since birth..MY cousin and her nine year old daughter died within a year of each other from uncontrollable diabetes..(Pancreas issues also?) MY aunt sixty two suffered from rapidly deteriorating heart condition and died too early.. two of her boys have the physical facial features of andersen tawil one of the boys now a man spent most of his child hood in state institutions due to mental problems as did my older brother..my mothers older sister died during child birth attributed to a bad transfusion.. could it have been indeed the andersen tawil.. I think so. the sensory overload issues are quite frequent among family members.. MY other older brother has a congentital malformation of the hip socket called perthes syndrome also related? He also has gone blind in one eye (intracranial hypertension) i feell this is related to the andersen tawil..I do believe as the doctors and researchers study this they will find a lot of the answers for other illnesses too!! bYE FOR NOW karen oh yes both my sister and i have and had severe migraines and cramps with our periods also.

Hi Karen- I have to admit, some of these symptoms don't sound familiar as part of what is currently understood as being part of ATS. Like stomach , gall bladder, glands ....Anyway, not familiar with these things being considered as part of ATS- but I do know there surely are things that are part of ATS that haven't been formally acknowledged yet. For instance my son had problems being unable to hold (sorry) pee- he was wetting but had no sensation of doing so a lot of the time. It turns out that happens when he's really weak- or just when the episode is breaking. And now that he's stronger more often with treatment it almost never happens. We were told ATS should not affect his bladder. But many tell me they release lots of( pee) when they pull out of an episode . Do you have morning weakness- as in are you ever weaker first thing in the morning ? Does exercise bring on muscle weakness? Illness, such as a cold of flu? Heat? Cold? Are you less coordinated than others, or were you? Less athletically inclined? Well, just thinking out loud with you. But yes, many, many patients have been put through very tough times with physicians telling them its all in their head. I'm sorry you've lived through that as well. Hoping you'll get good help soon! Loren

Loren havent been on in a few days. What got me thinking about this was my abnormal pap smears have had several paps all abnormal but non cancerous no papilloma virus found.. paps years ago were all abnormal too!! ive read that andersen tawil presents with vacuoles in muscle cells.. googled cervix and quess what it consists of smooth muscle tissue ( makes sense to me) as do many of the ducts in the body.. That is why i think perhaps there is some relationship with the smooth muscle tissues malfunction (as in the heart?) Just something to put out there,,as well as know too much insulin makes us hypos feel pretty bad. starch food. But once the pancreas has been compromised insulin injections are needed as in my brothers case or supplemented as in my mothers with glucophage!! I usually had to rest after eating quite often and even adjusted my way of eating in order to minimize attacks during the day when i was trying to function..ive been thinking about what i want to do and i believe im gonna ask my primary physician about a referral to Dr Griggs or Rabi tawil in Rochester New York..I did some reading on the urinary tract and it is controlled by voluntary muscle and to me the question is why wouldnt this potassium problem affect these muscles too? involuntary muscles also if they indeed have vacuoles why would they not also be affected? Just contemplating.It is my belief the abnormal cells in my paps are due to vacuoles and not cancer.. karen

Loren, back again to answer your questions. Yes ive always been uncoordinated as a matter of fact i remember being give an E in gym class back in sixty-eight in the fifth grade.. We were doing what was called the presidents physical fitness evaluations (after president kennedy). I was devastated my first E. My mom stood up for me and got it changed to a c- because i wasnt insubordinate or a bad kid just couldnt pass anything!! Funny you should ask about being uncoordinated as that was the joke between me and my friends uncoordinated so my nick name was "twinkletoes". I work one day or so a week in a small bar restaraunt and for me if i keep working at a slow and gentle pace wihthout sitting down i have better luck at work cause once i slow down things tighten up.. for example we had a busy day were i was hoofing it pretty good all day long. bye the end of the day needless to say i needed i sit down// i walked about a block after work to the horseshoe tournament where my boyfriend was playing and sat and watched for a half hour.. On may back to where i worked and had my car parked the muscles above my hips started tightening up and i wasnt sure i was gonna make it back to my car..Luckily i did went right to my car after popping a few potassium tabs and went right home to bed for several hours,, then i was able to get up and get around..At the same time the shoulder and neck musles were tightening moving downwards to wards my hips.. i have to wear a nightgown or t shirt to bed to prevent chilling of the muscles.. i will wake up extremely stiff.. not so bad since taking potassium though,,I do not do well when i get too warm.. I overheat quite easily and am going to ask if the doctors will check me for malignant hyperthermia..I am one of those persons who do not do well with anesthesia for dental work.. i also believe something happened to me during the gall bladder surgery but of course the doctors dont tell you all that happens in the surgery and if you dont specifically ask they wont tell you... When i came too i was screaming and tearing the oxygen mask but dont remember what happened,, just knowing its not all in my head has been a great relief for me and that treatment with something as simple as potassium has made quite an improvement. But i am certainly looking forward to refining my medications for optimal benefit and diet too!! I am on a potassium sparing med for blood pressure and a potassium sparring diuretic too but i do believe they need refinement due to cloudy head chronic fatique and add like symptoms im still having.. karen

Hi Karen- Wow- lots to think about, all the time, isn't there? Re: smooth muscle effects- I was told ATS only affects skeletal muscle. I admit I don't know why, and I can't verify if this is true. It is what one physician believed to be true when he told me. I always hold thoughts in the back of my mind, waiting to see what will come to light as further research is done. It's really interesting you feel your muscles tighten up- my son goes floppy like a rag doll. Do you get stiff , or do any muscles freeze( like being unable to unclench your hands or jaw?) Just wondering what you're experiencing- it's different than my family. My son shares your problem of easily overheating . His cardiologist offered to refer him for testing of his autonomic nervous system, but when I asked her if it would help define different or better treatment she said honestly, no. So I passed at the time. I am a big believer in having tests and research done- it's the only way the science of treating people will ever move forward. so if a researcher needs some info and I think that info will help move things forward I am all for it! In this case I dont think it would have been of mush benefit . It sure sounds like you are already started on a good path with your meds, but I do know what you mean about tweaking it. That's what has made all the difference for my son. So scary about your reaction after surgery- yikes- the things we don't know about when we're out cold! Good to hear from you ! Good luck with your referral! By the way, have you heard from Kathy on her appt w/Dr. Venance? Take Care- Loren

Hi Karen and Loren, I'm here. Haven't heard about my appt. yet but plan to phone at the end of the week to check on it. I find the urinary issues interesting. On the most part I think my urinary incontinence is from having 3 babies but I know after an attack I have to pee real bad. Because alot of my attacks involve uncontrollable shaking before the weakness or paralysis I thought that it just shook up my bladder. Because the research of ATS is basically very new, I feel so much more will come to light with the increase in numbers of confirmed cases. I will most definitely be involved in any research necessary when my diagnosis is confirmed. If I can spare just one person from going through the diagnosis nightmare I've had it will be all worth it. I also have what I call temperature change intolerance. The cold has always bothered me. Co-workers used to tease me because I always wore my ski-doo suit to and from work because if I get chilled it takes forever for me to warm up. I also have a problem with overheating. The majority of my espisodes involved floppy paralysis but one attack I had I went completely stiff and I couldn't move or talk. I thought I was talking, just jarbled but my son said it was just grunts coming out. I thought I was having a stroke. Even the ambulance paramedics couldn't believe how stiff my body was. Really don't know what happened. As usual, the ER doc was baffled. As ridiculous as this will sound, I wouldn't be surprised if my chart is flagged, SOMAW (stressed out middle aged woman). I think I just made that up, but you never know. I do recall one incident of my jaw locking for several hours and another when my left hand wouldn't open every morning for a few weeks. I would have to use my right hand to bend the fingers straight one at a time and then I could flex them which would make them work again. The finger stiffness was attributed to a promotion to supervisor which required alot of writing on a clipboard that I held in my left hand. Made sense. Karen - If I've learned anything over the past 8 years it is that people with specific medical conditions are NOT immune to unrelated medical problems. I understand how difficult it is to sort out symptoms and designate them to the correct cause, especially in our cases when we don't have a confirmed diagnosis. Hang in there and keep fighting for a diagnosis. I'm sure in my next post I'll be able to let you know when my appt. in London is. Kathy

Hi Kathy- So good to hear from you! I had been hoping you'd already been seen! Sorry you're having to wait! I'm all for phoning- sometimes these things are just buried on a secretary's desk! About the stiffness you describe- my mother-in-law does get a very mild form of that and it really sounds like myotonia . Sometimes after carrying in grocery bags her fingers will need to be opened up by her other hand as they are a bit frozen in a closed position. Also, more often- her toes bother her at night- her big toe will just pop up and freeze in a weird upright position, waking her up. To relieve it she has to get up and walk around on the thick carpeting in her living room for a while. I think myotonia is not listed in the official symptom list for ATS, just as the urinary issues aren't, so sometimes when you bring these things up they don't fit neatly into the pre-designed"box" that some physicians assign patients to. Thinking about it, my son had just recently mentioned he felt "stiff" , but to my knowledge it was the first time.Not something happening frequently to him anyway. I can't wait till more symptoms are officially documented and acknowledged! It will make such a tremendous difference for everyone- now and in the future. So on my end, I do report symptoms honestly but very carefully and document them in a notebook I keep as a journal of my son's meds. attacks, symptoms possible triggers etc. Kathy- I just thought I'd mention that Dr. Shannon Venance also works in coordination with Rochester and they do recommend her- so that's a hopeful sign! I love your new term- SOMAW- I definitely qualify for that too! : ) Just so you both know- I'm leaving for rochester for 5 days starting tomorrow and don't think I can pick up this site. I can pick up e-mails on my cell phone though. If anyone wants to exchange e-mails off list I'd love to, now or in the future. Hmmmn- I'm trying to figure out how to do this w/out posting it on the world wide web... Well, I'm clueless- so- here goes: beachplums8@yahoo.com Take Care All- Loren