E Soskis

I used to exercise every day - the aerobics queen...when the disease hit hard, I couldn't exercise anymore. I am lucky to walk around the block once or twice a week - I try to walk a little at work when I take a short break. My heart rate does not rise to accommodate any increased demands. In fact, it drops out so, I can't exercise. My internal medicine MD and cardiologist seem unconcerned about whether or not I am able to exercise - so, I don't worry about it!

I understand about the dignity issues - since I work with lots of doctors and nurses, it can be embarrassing to have certain procedures performed by my co-workers and colleagues. I have to say, they have all been very nice and only teased me a little! - they have always attempted to preserve my modesty and I appreciate their efforts.

I guess one of the most frustrating aspects of dysautonomia is the bladder and genitourinary dysfunctions. I have had to periodically self-cath and have battled urinary infections off and on for years. I hope the suprapubic cath is the answer for you - I know you are frustrated and "over" it all by now!

Are you having gastroparesis symptoms? - perhaps that should be investigated - I assume that the hospital tested you for upper GI problems since so much vomiting can be indicative of gastric issues - esophagitis from the vomiting can cause pretty terrible chest pain - there should be medication to calm all of this down - I'm so sorry you are having all of these issues - dysautonomia can really mess up the GI system - hope your MD is willing to keep digging.......

I've never had a suprapubic catheter but, I am familiar with them as I have been in nursing for most of my life. Usually, suprapubic catheters are placed because there is some type of damage to the normal physiology of urination. I work specifically with trauma so, usually it is for a traumatic reason. The catheter is placed through the wall of the lower abdomen by-passing the genitalia. They are either sutured in place or locked in place with an external sticky-tape lock. I have never seen one simply fall out on its own - if you snag it on something or accidentally tug on it, it could possibly be displaced. Once you have had it awhile, the body heals in around it and it is pretty snugly secure. Is this a long-term placement? - if it is, you will want to discuss with your physician the proper techniques to handle it and prevent infections. Your MD should have detailed instructions and a "FAQ" sheet to assist you. Be sure you have discussed all possible options with your physician as to alternatives - I don't know your situation but, you should at least have an idea of the various types of bladder draining treatments and an honest discussion as to which ones work the best in your case. As for pain, I again have never had one but, have worn a foley catheter for weeks at a time - it is something you get used to after awhile - just like all the other things we have to get used to!

The neurologist told me that AAG is very rare. In fact, he called me in the middle of the night just to tell me how rare it was and how high my antibody levels are that show I indeed have the disease. The test can be run by several labs in the USA. My understanding is that just because the test comes back negative, it does not mean one doesn't have the disease. Mayo in Rochester has done the most work with the disease and they feel they have the most definitive testing. The neurologist group that is treating me consulted with Mayo to determine exactly what lab tests needed to be performed and how to order them. Once the origin of the disease was proven not to be cancer, then the lab tests definitively pointed to AAG. I began treatment with IVIG and now am receiving plasma exchanges. The next step would be immune-suppressant drugs in combination with plasma exchanges. The supply of AAG patients from which to perform a scientific study is very limited therefore, treatments are anecdotal and "recommended" but, not proven by any definitive study. Remember, there are other forms of autoimmune neuropathy - if your physician thinks AAG is a possibility, have him test for it but, keep an open mind to other possibilities.

Wow - I think all of us live on an emotional roller coaster. I know that when I have been down a long time with prolonged flaring of my disease, I become rather depressed and feel that life is useless - I don't want to carry on. Yet, when the flaring lifts, I feel better and wonder why I ever allowed myself to get caught up in such negative emotions. Don't feel like you are alone in this. We all know what it feels like. The protracted nature of this disease and generally feeling yucky all the time has taught me that I cannot waste time on focusing on the downside. I may be stuck on the couch or in my recliner for days on end but, I can pray for others who are having a bad time and send out notes of encouragement to my church family who are suffering as well. It seems like when I re-focus on the needs and sufferings of others, my own difficulties feel not quite so heavy and distressful.

Good luck with the TTT - you will do fine and it will be over quickly - then, one less thing to worry about - and maybe a big piece of the puzzle will be answered for you.

IV fluids work well - I used them regularly in the past. I agree that the faster they infuse, the faster they go through. 1 liter over 2 hours worked well for me. I was fortunate enough to be able to hang them while I worked so, I didn't miss any work time. The only draw-back was the constant use of peripheral veins which eventually became scarce and difficult to obtain. This took a couple of years so, it is not problematic right at first. Would your physician consider hanging the fluids in his/her office? Some physicians have IV capabilities in their offices. Would a home-health agency come hang them for you at your home or job (if employer agreed)? The home health agency I use pretty much will accommodate whatever I need and request. If you can learn to start your own IV, you may be able to order your own supplies and fluids through an agency and simply do it yourself. Once I had a port inserted, my physician did not want me to access my own port and a port or central line requires the use of an IV pump and not straight gravity drip. I then had to go to the home health agency or the ER for fluids - kind of limited what I was able to do and how much fluid I received. I have a PICC line now and have been giving myself home IV antibiotics for the past month - I have had no difficulties but, can't keep the PICC much longer - as long as you have the proper supplies and flushes, you could do a lot for yourself at home. Good luck and give the IV a try - you won't know until you try it a few times whether or not it will work for you.

Thanks Spinner - I know you would help if you could. You are indeed correct - the majority of people go through life focusing on trivial issues and fail to see the big picture. The "blessing" of this illness is the realization that "it's not about me" - life is richer and fuller when helping others - I try very hard not to bother others with my needs or burden anyone with having to assist me - it is just unfortunate that the very few times I have actually asked for assistance or help, no one came through because they all were too "busy" - yet, everyone says "call me if you need anything" - that alone causes me to actually think before I repeat trite expressions - if I don't really mean what I say, then why say it!

How blessed most of you are to have friends and family who "get it" and provide so much assistance and support. My mom understands but, she cannot help due to age and debilitation. It is sobering to realize you need to go to the hospital in the middle of the night and there is absolutely no one upon whom to call to help or for transportation. I too have God and couldn't make it without Him - I guess you could say He actually drives the car in the middle of the night because, I make it to the hospital somehow! I know I'm never alone spiritually but, it would be nice to have a physical presence of someone who cares or is willing to assist.

I would say that between all my friends, family, and co-workers, no one really "gets it". It's not that they don't care - they just don't understand this crazy disease. I have answered questions and explained things over and over but, to no avail. I know that until I experience something first-hand, I don't have a true appreciation for what someone is going through or has gone through. I do know that because of my illness, I try a lot harder to listen to others better - especially when they are telling me a difficulty they are experiencing. So, I don't hold anything against my family, friends, or co-workers - they are nice and they mean well - they are concerned and will attempt to help me in anyway they are able but, I have given-up on anyone actually understanding what is going on with me and fully appreciating the lifestyle-limiting nature of the disease. I am now used to the repetitive questions, the expectations that I should "be normal", and the lack of understanding why I say "no" so often to inane, unsafe requests that would put me down if I tried to respond.

I can't tell you if it lowers my heart rate upon standing - my resting heart rate is 20-40 so, I have a pacemaker to keep it 78-82 -When I stand or move around a bit, my heart rate actually bottoms out lower than the resting rate- midodrine does not seem to change how my pacemaker functions so, I assume it is not increasing my rate - but, it is not decreasing it either. The autonomic failure is what is messing-up my intrinsic heart rate.

Good luck with the midodrine - I hope it works like a charm for you! I'm dependent upon plasma exchanges and have not been able to have one since the end of August due to on-going blood infections so, I feel kind of like death on a cracker right now - I'm increasing my midodrine daily in an attempt to keep upright, working, and maintaining consciousness. I don't know if such a low dose (quartering a 2.5mg tablet) will have any effect on you - sometimes, drugs in very low dosages from the normal don't have the intended result. Don't be afraid to increase your dose if you don't feel any improvement at first with the low dose. Just be aware of the side effects so you are not surprised by them - Right now, I'm taking 20mg when I get up in the morning, then 5 mg every 4 hours until about 4pm or 30 mg/day and I'll probably need more before I am able to resume plasma exchanges. I think it is a wonder drug and I couldn't make it without it - hope it really does the trick for you as well! - keep us posted.......

I'm not particularly an anxious or panicky person so, I don't know how to speak to that. I do have quite a bit of "brain fog" - difficulty thinking clearly, forgetting simple sentences, poor recall, etc...When I am flaring, I sometimes feel I'm not really present - very disconnected - kind of like I'm off in the ozone layer somewhere - I simply attribute it to the flare and apologize to my co-workers. My friends and co-workers know me pretty well and are used to dealing with a "space-cadet".

So...is Mayo saying that if clinical symptoms fit, you have an autoimmune neuropathy? - and have they ruled out a tumor as the cause? - am I reading this right? There is nothing like clarity and user-friendly communication between health professionals and patients........

Yes, I was highly positive on the antibody test for AAG (autoimmune autonomic ganglionopathy) - I have dysautonomia symptoms including neuropathy - the diagnosis of AAG actually saved my life as I began receiving the correct treatment once properly diagnosed.

Cala - if you find yourself on the floor from passing out or nearly passing out due to low blood pressure, then midodrine is a great drug to "rescue" you and allow you to get up and get going. I have used midodrine for many years and it has saved me more than once. Since I have been on it long-term, it takes a little longer for it to fully work. When I first began the drug, it started working within 15 minutes and I felt much better within 30 minutes. Now, it can take up to an hour for me to feel better and I sometimes feel the side effects even 2 hours after taking it. It sounds like a good idea to start at a low dose and increase as needed. You can always add a little more of a dosage but, you can't take it back once you've swallowed it! Hopefully, it will work well for you and you can adjust your timing and dosages to prevent as many sudden episodes as possible. You don't know until you try!

I never thought much about vaccines until I became extremely ill after receiving the shingles shot. Turns out, I am not able to take any type of live vaccine - it sets off the AAG and launches the autoimmune dysautonomia. Who knows if this was the trigger of AAG when I received vaccines as a child? - Still in all, I vaccinated my children - I have seen first-hand the effects of tetanus, whooping cough, measles, etc. Once you have seen a child die from a preventable disease, the very slim chance that the vaccination will trigger a weird response becomes a non-issue.

Welcome Darlene - hope you find the team of doctors that will work best for you. I am currently under the care of an internal medicine MD, a neurologist, a cardiologist, a vascular surgeon, and an infectious disease specialist. I also see a pathologist and at least 2 nurses with the apheresis team. I have been blessed to have a great medical team. It makes all the difference to have medical specialists that I trust, literally with my life!

My physician put me on "Align" - he said it was one of the best brands OTC. I've been on it more than a year and it helps some with the gastric and intestinal distress. I have also been on antibiotics for over a month. I've been in and out of the hospital for IV antibiotics and now, give my own IV antibiotics at home - for at least another 2 weeks. It is important to be on a probiotic while on antibiotics - especially IV - the good bacteria gets killed off with the bad and can lead to some nasty intestinal infections if not replaced by the probiotic. I would think your physician has a preferred brand as there are different types of probiotics on the market. I know "Align" has worked well for me and I have tolerated all the potent antibiotics without GI distress......

The best way I can explain it is that when we are upright, the heart has to work a little harder and pump a little more effectively to maintain blood pressure. Our peripheral blood vessels usually constrict down some to accommodate for the upright position and maintenance of a decent blood pressure. The autonomic nervous system controls blood vessel constriction and heart contractions. Since our ANS is not functioning properly, the nerve signals from the brain and spinal cord don't reach the heart and blood vessels correctly. This malfunction of the nervous system communication between heart and blood vessels results in lack of constriction and effective heart contractions. Our vessels are "floppy" and our heart loses the ability to adequately compensate for postural changes. When we challenge our system even further by adding extra demands upon our heart and blood vessels, some type of physiological decompensation is inevitable. Walking up stairs is a physical challenge in and of itself requiring more work by the heart and blood vessels that they may not be able to give. Adding a heavy load to carry and walking up stairs may completely overwhelm any compensatory efforts by the heart and blood vessels causing the symptoms we all experience: drop in BP, fatigue, shortness of breath, etc...

I think we all have to learn our limits and recognize that there are some things we will not be able to do - there may even be less we can do while we are experiencing a flare-up of our disease. I personally don't like limitations and get quite annoyed when I can't do what I want to do. It really doesn't matter how annoyed I get because I still have limitations and have to live with them like it or not.

I have a team of physicians that work very well together: internal medicine, neurology, vascular, infectious disease, pathology, as well as cardiology/electrophysiology. They are all willing to listen and not afraid to ask the right questions. Without their interdisciplinary cooperation, I don't think I'd be here today. I am richly blessed and very grateful for each and every one of them.

In the past month, I've been in the hospital three times: sepsis requiring removal of all of my central lines and infusaports; necklace graft surgery with resultant further sepsis; and just this week, another trip for a new type of sepsis and blood infections- I'm now administering IV antibiotics to myself every day for the next 21 days - I've been sick as a dog yet, each and every visitor has assured me I don't look "sick" - If I continue to hear how wonderful I look and that I can't possibly be sick, I'm going to start replying that I'm just making it all up - I check into the hospital for a vacation and I hold the thermometer under hot water in order to produce a temperature of 103 or higher! Perhaps folks are just trying to be nice but, it devalues my feelings and dismisses my illnesses as "fictional". A simple "sorry you're feeling so bad" would be nice to hear instead of "gee - you don't look sick at all".

I'm not particularly "young" (52) but, still too young to retire or receive social security. I'm sorry about your experiences - this is why I have never attempted to obtain any type of social security disability - the determining factor is whether or not you are qualified to perform any type of job and are able to do so (I have a friend who works in the local social security office and he coaches me) - so, I just keep working - I am fortunate enough to have an employer who understands my situation and makes many allowances for it - especially since I've been in the hospital so much already this year and still facing another admission in a couple of weeks. Are you able to handle a desk job? - I work at the computer most of the day and keep a little bench under my desk so I can prop up my legs/feet. I teach occasionally and I bring in a chair or stool to sit on so I can lecture - I am attempting to cut down on the travel as this is quite difficult for me - I really just take it one day at a time........

I'm about to be hospitalized in a few days for several procedures. First, I lost my central IV access (permcath) due to sepsis - I also lost my infusaport. So, the vascular MD is going to place a femoral/groin line for temporary plasmapheresis then a couple of days later, perform a "necklace" procedure. I am intimidated by this procedure. It seems quite invasive and disruptive to critical vasculature in the chest region. I'm growing weary battling the AAG. 2 years of IVIG and 3 years of plasmapheresis have worn me down. This seems to be just another insult to my body after a series of on-going insults: failed AV fistula creation with multiple attempts, permcath for plasmapheresis hanging off my shoulder for 3 years only to become infected and septic; increasing gastroparesis that will necessitate a feeding tube sooner rather than later; and now the re-arrangement of my chest vascular system to accommodate a graft that will tunnel under my skin like a "necklace" from shoulder to shoulder - I mean, when does it stop? - is this a forever torture sentence? - if AAG isn't likely to kill me, then all the treatments and attempts at treatment will. I shall visit the idea of an immunosuppressant with my neurologist while I am in the hospital - to me, it is just another "treatment" that promises to lead me down the path of further complications and incessant torture.

This sounds terrible but, I'm glad to know I'm not the only one with such GI issues! I'm so sorry anyone else has to go through it! The past few months have been a nightmare - my abdomen swells so much that I can't hardly sit down or breathe deeply. Constipation followed by diarrhea is common. GERD symptoms and gas with loud rumbles and squeaks are quite embarrassing. The only thing that has relieved any of the symptoms (especially the bloating and swelling) is to quit eating solid foods. I have been on a soft diet for a few weeks and my abdomen has finally returned to a normal size. I can zip up my pants and sit comfortably now. I only eat anything that is readily digestible - does not require contraction of the stomach muscles - I started with liquids and progressed to very mushy things like mashed potatoes, soups, etc. I have recently branched out a little to very soft tiny bits of chicken that I chew very well - only a tablespoon or two at a time. I mash up vegetables after first cooking them to death - so far, so good.....not an exciting diet at all but, sure feel better with it. I dream of hamburgers, steak, tacos, and other "sinful" dishes - it's a killer to watch all my co-workers order out and have lots of delicious looking foods - the temptation to cheat is great but, I stand firm! (or mushy)