E Soskis

I didn't have a lip biopsy - I had a blood test ordered to detect Sjorgren and it was negative. I do have AAG but, not Sjorgren - odd because I have the exact symptoms of Sjorgren. Is the lip biopsy the most definitive test?

Seven years ago while undergoing one of my various number of evaluations, a very sharp physician began to watch and study my daughter. He told her she probably has the same thing I have - she was in her early 20's at that time. Fortunately, she has not had any particular obnoxious symptoms whereas by my early 20's, I was quite symptomatic. Hopefully, she will escape my fate - at least she has been clued in to what to look for and will have a specific starting point should she begin to travel down the long road of dysautonomia......

Thank you Alex - this disease has taught me that in addition to helping others, I have to be willing to accept help myself at certain times. It really is true that we get back what we put into life - everything comes full circle. I used to think I was a nuisance to others when I needed assistance but, because I am willing to help others when they are down, they are very willing to help me when I go down. I love the song from the "Lion King" - listen to the words of the "Circle of Life" - so true!

Does anyone with AAG have experience with plasmapheresis? - I have been undergoing plasma exchanges for over 2 years now - about every 2-3 weeks. The treatments seem to not be as effective as they were at the beginning. I received IV immune globulin for about 2 years (once/ every week) before the plasmapheresis and it definitely quit working at the end of 2 years. Where do I go from here? Suggestions? Experiences?

Well, I've been to one of the listed hospitals - very unimpressed. I think each person has their own individual experience as to whether the hospital is rated favorably or unfavorably. Personally, I'll stay with my hometown hospital because I have excellent rapport with my physicians. I respect them and they in turn, respect me. We problem solve as a team and even when things go awry, we're all in it together. I've been sent to several major institutions for opinions and work-ups and have been terribly disappointed with all of them.

I have AAG - I am antibody positive - off the charts from what my neurologist says....yes, eating is a problem - all the way around it is a problem - not only from a blood shunting standpoint but, from a gastroparesis aspect as well. BP drops after eating - feel weak and tired - abdomen will swell twice the normal size if I don't keep on some type of compression garment when I eat - have to eat very small amounts at a time - graze through the day - I feel like I should moo most of the time.....takes many hours for my stomach to empty - up to 8-9 hours if I dare eat more than what will fit in the palm of my hand easily.....very annoying to have constant abdominal swelling and discomfort - have to keep all sizes of clothing - small in the morning - XL in the late afternoon - moo

Anyone who has chronic nausea with vomiting has my utmost sympathy! I think one of the worst feelings in the world is nausea. I can stand just about anything else but constant nausea! Thankfully, I don't have it as much as I used to - don't know why - but, I don't. I have learned, however, to hit it hard when it first begins to show up. I keep Benadryl, Dramamine, Phenergan Tablets and Suppositories in my arsenal. If I take something early enough, I can prevent the vomiting. Once I start actually vomiting, I have to go to the ER for IV fluids. Yuck!

I have Reglan in my medicine cabinet - I take it only as a last resort and then, I take 1/2 a pill at a time. The side effects of a full dose cause me to have a restless feeling, tremors, anxiety, and a darkness I just can't describe. My MD said he would prefer I not take it at all but, it is the only medicine he has ever offered for all the GI distress. It does help the bloating, pain, and cramping. If you decide to take it, I would definitely start at the lowest possible dose. I do OK with taking only 1/2 pill once or twice a day - anymore than that and I am miserable from the side effects.

I know what you mean. When I am asked "how are you feeling" - there are many times I simply don't know how to answer. I don't feel good but, I don't feel particularly bad - I just can't explain it. How do you explain brain fog, fatigue, confusion, weakness, and general malaise? - All are annoying but, we carry on despite the random symptoms. Are you often alone when you have a sudden flare of symptoms? - I'm lucky because I live with my mother and I work in an office with other medical people so, I'm rarely all alone. Is there someone you can call when you have these bad feelings? - It might help just to have a friend, co-worker, or neighbor you could call and let them be aware of your situation - ask them to call you back in an hour or so to see if you feel better....

I'm afraid that until someone rich and famous comes down with a form of dysautonomia, there won't be much attention paid to the related diseases - especially the ones that are fairly rare. - this includes teaching and education about dysautonomia at medical schools, nursing schools, and other related professions. Most physicians and nurses have never heard of dysautonomia and since it is relatively uncommon, they have no idea what to do with someone who has all of the wide-ranging symptoms. I've never understood why a medical professional is dismissive or quick to jump on the psychiatric band-wagon when they don't know the answer or are presented with a cluster of symptoms that don't seem to fit together. What happened to "inquiring minds"? - It is not acceptable in my office to say "I don't know" and simply walk away. The correct answer is..."I don't know right now but, I'll keep digging until I find out". When I used to work directly with patients and was asked a question I didn't have an answer for, I simply told the patient the truth: "I don't know - let's find out" - sure, it takes a little longer and sometimes a lot of research and digging but, it usually resulted in an answer and definitely improved patient satisfaction and confidence.

Be sure you speak to your anesthesiologist before surgery - sometimes, they are not familiar with dysautonomia and need to have the chance to read-up on protocols for induction and types of medication they should use and the types to avoid...........insist on IV hydration with saline both before surgery and after surgery - you will recover better and faster......

I'm a grandmother now - when my kids were young, I definitely had trouble keeping up - I did my best because, that's what moms do - I wasn't diagnosed at that time and everyone thought I was a little crazy - I just couldn't do the "extras" - no team sports - no PTA - etc...I tried to go to school events in the evening but, when I passed out during the science fair presentations, that ended my participation. I think I was viewed as a "bad" mom because I had to rest so much and said "no" an awful lot. I definitely recommend being a grandparent - I can enjoy the grandkids on my own terms and hand them back when I need to - Oh, I stretch at times and keep them when I'm really too tired but, they behave a lot better with me than with mom and dad!

OK - I never new a brain lesion could be "normal" - I thought it always pointed to something like MS - perhaps a second opinion? - I mean, I've worked in healthcare for over 30 years and this is news to me.......any other symptoms? - muscle weakness, tremors, fatigue, wobbly legs, foot drop, occasional inability to walk normally - sudden buckling of the legs.......I would think your headaches are caused by the brain lesions - not the other way around................???

Well if he does, let us know. I am about at my wits end with the constant GI dysfunction. The pain and swelling are enough to drive anyone batty - just throw in extreme constipation and alternate it with profuse diarrhea - that is truly the "icing on the cake"......

I have Raynaud's phenomena which is associated with dysautonomia and peripheral neuropathy. I get color changes of my hands or feet as well as strange sensations. I just had to quit a walk around the block due to extreme prickling feeling in my hands and feet - they were beet red and pretty painful. I have had occasional sensation of water running across my arm or leg and when I look at it, there is nothing there. I guess it is all dependent upon which nerve pathway is messing up at the time......

I took immune globulin IV every week for over a year. It kept my autoimmune dysautonomia at bay during that time. There's no guarantee how long it will last but, I figure any relief is better than no relief! Once it quit working, I began plasma exchanges and have been having them every 2-3 weeks for more than 2 years now - so far so good! I wish you all the best with the immune globulin - hopefully, you will have a lot of relief from the relentless symptoms of dysautonomia.

Oh my gosh! The GI issues are truly annoying - I do have autoimmune dysautonomia and the GI part has really been flaring in the past few weeks. The trigger foods are....all food! The only thing I can eat without swelling up like a blow-fish is yogurt, jello, or pudding. Solid foods have been causing much discomfort, swelling, and pain. I get some relief during the day because I wear abdominal compression garment (spanx and the like) but, as soon as I take them off in the evening, I begin to swell. It takes hours for my stomach to empty and mostly backs-up in my esophagus. Yuck! I have a range of clothing from small to XXlarge - told my co-workers I'm just going to start wearing tents because I can swell without constriction! I gain and lose 10-15 pounds every couple of weeks - flip flopping weight gain/loss. When I am in severe pain, I take reglan but, it causes a bad anxiety reaction if I take more than a tiny dose and if I take it more than once or twice a day so...does not help a whole lot. I've talked with 3 MD's about this but, they don't have anything much to say except "it's your disease"....so frustrating.....will see the MD yet again in a couple of weeks....hopefully he can offer me something that will enhance gastric emptying......I do feel very sorry for anyone with GI involvement - you all have my utmost sympathy and empathy!

I'm not sure why you have normal blood pressure while standing up and low pressure with sitting or lying down. It takes more blood pressure to stand up and move around than it does to sit or lie down. I have very low blood pressure. I rarely have a systolic above 100 and live mostly in the 80 systolic range. Midodrine is my best friend - it makes such a tremendous difference in how I feel - I have learned to recognize the symptoms of dropping blood pressure - At the first hint of weakness, confusion, or difficulty speaking, I do something to elevate my pressure: drink a lot of fluids, take midodrine, prop up my feet, or lower my head. I suspect that the inactivity of sitting down or lying down for you causes your blood to pool and you don't have adequate circulation. At least when you are up and moving around, your heart rate increases and your blood vessels are constricting to allow your BP to stay elevated. I don't think you can take midodrine and lie down - it causes the blood pressure to rebound and it can spike too high. Do you sleep in the "dysautonomia" position? - Head elevated about 30-degrees, pillows under knees and both arms? - this promotes the best circulation and discourages pooling of the blood. When you sit, do you elevate your legs or do you hang them down which encourages blood to pool? - You may do better with compression garments - are you adequately hydrated? - I know this is frustrating - anytime you can't keep your BP up, it becomes a huge problem - especially when you have responsibilities and simply can't just drop out of life!

I think it all depends upon which neural pathway is going haywire at the time. My neurologist didn't seem to think it odd that one side or another was involved. I've had my left side turn beet red while my right side paled out to a lovely ghostly shade of white - at the same time. I've had one side that felt cold and the other felt hot. Lately, my left leg turns numb and has prickles like ants crawling all over it at various times during the day. The left side of my face always feels somewhat numb - cranial nerve VIII dysfunction - ...in fact, that was my very first symptom I experienced with the onset of this disease.

I can relate - it is no fun when the bladder is involved. I am also having problems with swelling, water retention, and weight gain. I thought it was related to my frequent plasma exchanges but, the MD's think it is just another joy of dysautonomia. I the past 3-4 weeks, I've gained 15 pounds and lost 13. One day I'm peeing like a racehorse and another, not so much. My feet are swelling some but, my abdomen is quite swollen at times. I get short of breath when I begin to swell. I'm what they call a "retainer" - I retain urine in my bladder. I've also lost sensation and the "urge" to urinate. I can hold over a liter of urine in my bladder and not even know it. I also recently discovered that during one of my hospitalizations, I picked up a chronic bladder infection from a bacteria that is extremely difficult to eradicate. That is not helping my bladder problems and there is no way to get rid of it. All in all, now that I've tried progressive dysfunction from dysautonomia, I think I would like to find something else to do.......I'm tired of the bladder dysfunction, gastric dysfunction, Raynaud's and neuropathy, and cardiac arrhythmias with vascular dysfunction......Oh well.....we don't get to choose.....have to rely on faith!

Perhaps it is "referred pain"? - pain that originates somewhere else but is "referred" into another body part.....like, gastric pain can be referred into the chest, especially the left chest and up into the shoulder or through to the back? Any history of gastritis, ulcers, gastroparesis, or even abdominal "pooling"? How about gall bladder or gall stones - these all could be interpreted by the body as "chest pain"....

Ritalin kept me awake and alert. I took it three times a day with the option of up to 4 times. It allowed me to work efficiently and eliminated the "brain fog" - my BP is very low anyway so, it helped kick it up a bit. Unfortunately, there is a massive drug shortage in the USA on common drugs and Ritalin is one of them. I did not know this and my pharmacy allowed me to completely run out of it before telling me there was not going to be anymore for months. I went through horrible withdrawal and finally ended up crying in my MD office begging for a different compound. My insurance would not approve Nuvigil but, did allow Vyvanse. I don't like Vyvanse as much as Ritalin but, it is pretty good. I take 30 mg in the morning and it lasts most of the day. I crash pretty good about mid-afternoon so, I can't plan on doing anything in the early evening except sit in my recliner and watch TV. I would go back on Ritalin if I could be assured of a steady supply - you wouldn't believe how many drugs are in short supply in the USA - very common ones - a sad commentary on the state of healthcare and our society.

Vaccines are designed to ramp-up your immune system. My theory is that anytime the immune system is tampered with, anything can happen! It is well known that vaccines do save lives and the majority of people do fine with them. There are some of us, however, that do not handle vaccines very well. What is needed is a test that can identify the people that are likely to have major complications from vaccines. I don't know if this would be a genetic-related test or an immune antibody-related test. It just seems that it would be prudent to research and develop this type of testing. If indeed many of our dysautonoma conditions are brought on by certain illnesses or vaccines that trigger an abnormal antibody response, then this type of testing potentially could save a lot of people from serious diseases and help lower our booming health-care costs!

I went through surgical menopause a few years ago. In the past few months, I have started having weird episodes of "hot flashes" - it starts in the center of my chest and radiates outward - I get extremely hot all over - no sweating - occasionally turn red - most of the time, my heart rate drops out and my pacemaker kicks in along with multiple arrhythmias. It is especially worse at night when I turn over. It occurs every--now-and-then during the day and when it does, everyone looks concerned that is around me. I do not think this is anything related to menopause. I never had any hot flashes after my hysterectomy and they would not be starting now, years later. It is definitely related to position and that's why it occurs at night: I'm lying down and flip from side to side. I'm chalking it up to the weird and annoying world of dysautonomia.......

Is this the type of job you can make work for you? - you have specialized talent that could put you in the best position to negotiate your work schedule, hours, etc....If your boss is wowed by your work, you could use it to your advantage and name your conditions and hours that work best for you - might be worth a try since this is your dream job and something you really want to tackle. You never know until you try - I found that if there is something I really, really want to do, I can make a way to do it even if my body does not always cooperate fully.... (by the way, Jangle always gives good advice - )