E Soskis

well....one of the problems associated with dysautonomia is dry mouth - I usually keep a bottle of water close at hand - by the end of the day, I feel like I have a wad of cotton in my mouth it is so dry - my eyes occasionally feel very dry but, nothing like my dry mouth.....

Never heard that one before - my physician has no problem with my taking ibuprofen or any other NSAID - in fact, he has prescribed them before with no ill effects - I take 40 mg of inderal every 4 hours - never had any difficulties mixing NSAID and beta blocker.....what bad thing is it supposed to do?

I find IV saline quite useful when I can't seem to drink enough to stay hydrated - since beginning plasma exchanges, the need for IV saline has dramatically decreased. I do receive 1-2 liters of saline during the exchange which I now take once a month. It takes about a day and a half to recover from the plasma exchange due to low BP and dehydration and if I could keep the saline going after the exchange for 24 hours, I think I would perk up faster. The problem with regular IV infusions is the IV access for the infusions. If you have a port inserted, you really need an IV pump to put the fluids on and you have to be well-trained in sterile technique for access and de-access of the port otherwise, you can end up with a central line infection which is life-threatening. I had a port for 6 years AND an external central line for 3 years then became septic with blood infections - real battle.- had to have them both removed. I now have a "necklace" graft and although the MD has instructed me on how to access the graft, I am not keen on doing so. It is a dialysis graft that is better accessed by someone other than myself. I don't want to risk central infections anymore - too dangerous. Peripheral IV's are OK but, over time, your peripheral venous access dwindles and becomes harder and harder to obtain. So, if you can keep hydrated orally, it is much easier on your system. If you are in crisis, then an IV is probably the answer. If you and your MD decide on regular infusions, you will have to have a honest discussion about the best way to maintain IV access.

I don't know anything about dependency per say - I know I can't do without midodrine. Daily dosages fluctuate up and down depending upon how I feel and how close or far away from plasma exchanges I am - or if I have had to be upright longer one day than another - etc.....I have noticed that over time, it is taking a little longer for the midodrine to kick-in and start working - I would call that "tolerance" to the drug rather than "dependency".........

Interestingly enough, newborns commonly have acrocyanosis due to immature nervous systems - Raynaud's also causes an acrocyanotic-like condition by turning the hands/feet a mottled blueish color - not from an oxygen defecit but, from the nervous system malfunctioning - I guess your physician needs to determine the origin of the acrocyanosis to best know how to treat it - I occasionally have vasospasms in my hands which cause my fingers to turn deathly white - this type of vasospasm does indeed restrict circulation and thereby cut off oxygen supply to the fingers......

I agree with the possibility of ocular migraines. This type of migraine does not cause a headache but, wreaks havoc on the eyes. I used to lose vision in one eye for upward of an hour: kind of like looking through a child's kaleidoscope. Like Pink, there are wavy lines across the field of vision - like used to occur when adjusting an old television set to the proper channel. I don't have this so much now that I can keep my blood pressure up with midodrine but, I get all kinds of flashing spots in my visual field as it gets closer to a time for plasma exchange.

Well...until I received my pacemaker, my cardiologist told me I was not to fly - he was afraid I would bottom out my BP and drop my heart rate too much at high altitudes. I know that high altitudes can cause all sorts of problems but, if your physician says you will be OK, he would know best. Do you have a medic alert bracelet or necklace? I don't have one yet but, I'm thinking that it is necessary - especially when traveling....

Yes - low blood pressure is tough on the brain - when my pressure is extremely low, I feel terrible and probably am not pleasant to be around - you can't even think straight! The only thing I can think of related to your neoplasm blood test is that it is a tumor marker of some sort - some type of marker that would be elevated should there be a neurological tumor hiding out somewhere - I was told by my neurologists that the tumor would be in the chest and visible on CT scan. Thankfully, my scan was negative. I wish you all the best in your quest to find answers - just hang in there and keep plugging along....

If the thought is that you really have AAG, you need the antibody test - a biopsy won't give you AAG results - if a tumor is suspected, you need a CT scan with contrast of the chest - have the antibody test run by Mayo in Rochester so the results will be accepted at any major facility in which you may have to go for a consultation - shortness of breath is not necessarily related to "anxiety" - dysautonomia is known to cause dyspnea and SOB - the mechanism is lack of blood flow to the chest muscles which can cause tightness, constrictive feeling and SOB (shortness of breath) - especially when your blood pressure is very low - keep digging for answers - physicians are very quick to put all symptoms off on psychiatric conditions and anxiety - it too me years of searching before I received the diagnosis of AAG - and still, it is so rare that most physicians have never even heard of it let alone are familiar with it - I finally have the right physician and am receiving appropriate treatment which is allowing me to keep working and functioning - don't give up!

I've had to give up the abdominal compression - it was just too much and caused too much pain. I still wear the knee-high compression stockings - I feel better with them and can definitely tell when I don't wear them.

Are you fully awake when this happens? I wonder if you are asleep or partially asleep - 'cause it sounds like sleep apnea.......just a thought....

I've never had any trouble with tamiflu but, my daughter gets very nauseated and generally does not feel well while taking tamiflu. When my mom became quite ill with the flu, the MD gave me the prescription for tamiflu and even though I was her primary care-giver, I didn't even get a cold out of the deal! I would take it again under similar circumstances.

I didn't take the flu shot a few years ago and came down not only with the flu but, horrible pneumonia as well - took months to get well. Now, I take the flu shot the minute it is available - may not totally prevent the flu but, will definitely lessen the symptoms and shorten the course of the flu.

Kind of feels like deep pain radiating from the base of my skull down across my shoulders - almost like pulled muscles but, not responding to any kind of anti-inflammatory medication - neck can get very stiff - hard to turn from side to side - yet, massage does not help and in fact, makes it worse - after I have it for a day or two, off and on, I recognize it as the pain associated with dysautonomia - I don't know how the pain presents with everyone - it very well could be the type of pain you are describing - I'm sure we are all a little different with our pain responses......

A flare is a sudden increase in symptoms - may have had relatively few symptoms for awhile then all of a sudden, you "flare" and begin to have lots of symptoms - sometimes for no apparent reason - it just happens - can last a long time or a short time - just depends upon the symptoms and what is causing them to "flare-up" - as you get better at recognizing your triggers (what brings on a flare), then hopefully, you can prevent some of the flare-ups - not always but, sometimes.....

Yep - poor blood supply to the chest and BAM! - shortness of breath - also causes the "coat hanger" neck/shoulder pain - I get relief with a small dose of midodrine over and above what I usually take - it is very annoying to be gasping for breath while conversing with someone - also, the pain can just get downright miserable!

I'm sorry Spinner - it would be nice to have family that could rally around and uplift - but, it does not seem you have this - I gave up a long time ago attempting to explain anything about my disease to most people, including family - for the most part, no one really wants to hear it nor do they particularly care - I don't have to contend with unwanted advice because I simply don't talk about "it". I also learned a long time ago the old adage that we can't teach a pig to sing...it annoys the pig and it just can't be done!

Do you have any cobra coverage with your husband's insurance? - Can your receive any assistance from your ex for insurance coverage? Seems like the court would mandate assistance due to your chronic medical condition. Sorry about divorce - I know it is very stressful and I also know how it negatively impacts dysautonomia - any help the court can give you, take it!

As it gets closer to time for a plasma exchange, I have lots of visual disturbances. The main one is a bright flashing light that streaks across my visual field - kind of like falling star streaking across the sky. I also have depth perception issues. In the evenings, my vision is so blurry that I always wonder if there is something wrong with my glasses. I wouldn't be surprised if photo/color receptors in the eyes don't occasionally fire off due to the dysautonomia........

I have Raynaud's and it is from autoimmune dysfunction - There are many conditions that cause Raynaud's - basically, it is a nervous system dysfunction of the peripheral nerves - in my case, my fingers will suddenly lose circulation and turn white, cold, and have no feeling. I also have had this in my big toes. My legs will sometimes look purple and blotchy and they tingle like little ants crawling all over them. In fact, I occasionally reach down to "brush away" the bugs crawling on my feet and legs but, there are not any bugs! Lately, my left foot will suddenly go numb - even while I'm walking.

I wouldn't think you have guillain-barre syndrome - it starts as an ascending paralysis (feet to legs, to trunk, to arms, to head...) - it does usually start after an illness like the flu or a cold or URI. There are other syndromes that begin in arms and work down from there - (descending paralysis) but, pretty rare. If you have had a nervous system cancer in the past, the damage from that may just now be showing up. It sounds like you are doing all the right things by following up with your PCP and getting back into the cancer center for more testing. I wish I could tell you what makes Raynaud's better - I just treat the symptoms - wear gloves outside in the cold and dress warmly - that does not always help however.

I wonder if the doctor you saw was a bit on the jealous side? - maybe she's dreamed of being tall all her life......I wonder if the "Victoria's Secret" angels have trouble with their back from carrying around all those heavy wing-accessories? Perhaps Naomi Campbell has a lot of health issues from her 6' height? Then there is Michelle Obama - I guess she is just downright sickly from her height.....

Good Grief! What will we have to do next - draw our own blood as well?.....wait....I've had to do that already.....Welcome to our new and "improved" healthcare system!

I have discovered the joys of on-line shopping! Never again will I have to fight the crowds at the mall. I cannot walk around very long and I sure can't stand in line for more than a couple of minutes. "Shop 'til you drop" is supposed to indicate shopping is fun.....it has a whole different meaning for those of us with dysautonomia.

I started with IVIG (privigen) and it worked almost immediately - over 2 years the benefits began to dwindle until there were more side effects than benefits. I then switched to plasma exchange and have been on that for almost 3 years. I have a permanent necklace graft and go for exchanges anywhere between 3 weeks to 8 weeks - just depends upon how bad my symptoms get and how quickly I deteriorate. I remember the loading dose of IVIG was very rough - severe headaches, aseptic meningitis, fevers, very low blood pressure, nausea and vomiting - I was quite ill. Yet, I also remember it was the only treatment at that time that provided any sort of relief. I was near death when I was started on IVIG so, I figured I would have severe symptoms just because my own condition was so unstable. I have autoimmune disease so, produce "bad" antibodies. I don' know how IVIG would work on anything but autoimmune antibodies except maybe in those who don't have enough antibodies of their own. I hope you get your insurance to assist with the cost - my loading dose consisted of 2 IV bags that ran over 12 hours each bag - 20,000 dollars a bag......

Time...tincture of time...sometimes, midodrine and rest will help it clear faster....

Yes - I've never had a swallow test but, I do know that sometimes it is very difficult to swallow and food or pills seem to get "stuck" for awhile somewhere in my esophagus/throat region. I always cough a lot while I'm eating - I suspect I have borderline aspiration issues....I will deal with it when I absolutely cannot eat anymore - the neurologist said at that point, I would just have a feeding tube inserted......Baa Humbug!