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  1. Like POTSgirl I was very lucky - from the get go my symptoms were so severe as to be unignorable - no amount of 'anxiety' could make a persons blood pressure drop to undetectable levels within minutes of a TTT. I lucked out and within a few weeks of my symptoms starting I saw a neuro in the hospital who knew his stuff and had me on a tilt table in a matter of weeks. From there out treatment was underway. POTS was actually my 'misdiagnosis'... but it was all that fit at first. I have an awesome cardiologist who has been willing to turn over every stone - Most of the doctors I have seen over the years have either been open and honest about not having an answer, or have been willing to try treatments without solid answers. I am reminded from threads like this to be thankful for my team of docs.
  2. Very interesting! My symptoms started immidiately after delivery of my first son - my second pregnancy was awesome - my symptoms diminished, I was able to go down on my florinef dose, and I felt fantastic through most of it. The only 'adverse' effect was fetal growth issues and a very small placenta due likely to the beta blocker (metoprolol) I was on. Neither had a major negative impact on my son though and he was born healthy (if somewhat small) at 42 weeks. Unfortunately my symptoms came back with a vengance afterwards - but my underlying condition is not POTS, but an autoimmune condition - and this pattern is common with autoimmune disease (improvement with pregnancy, worsening afterwards). But the 'lull' in symptoms sure was nice!
  3. Interesting - I'd never heard the term 'pandysautonomia' but when i googled it the symptoms are identical to AAG (as is the treatment)! Clear like mud right? my story is not posted - It's long and convoluted, and confused by several different diagnosis' along the way before everything lined up and I was dx'd with AAG. Basically it started after I had my first child with severe OH and tachycardia issues. Dx'd initially with POTS, the NCS. Mayo Clinic in '03 - major workup - dx'd with 'autoimmune endochrinopathy' though they couldnt define any specific antibodies, or endochrine abnormalities that weren't attributed to the meds I was on. I pretty much 'gave up' on an answer/treatment for several years. In '05 my son was diagnosed with a Mitochondrial Disorder (Complex 1 Deficiency) which threw everything off and for a few years I was believed to have Mito (what are the odds it was something else right?). Things gradually worsened... pupil issues, dysmotility, UTI's constantly, Orthostatic Intolerance just got worse and worse in spite of increasingly high doses of meds. This past winter my 'sitting down' blood pressure was 70/40 on a good day.. standing up it was undetectable. Anyways last summer I saw a mito specialist after having had a muscle biopsy to test for mito come back negative. The specialist confirmed I do NOT have mito, but instead he said I seemed to fit the clinical profile for AAG perfectly - his colleague (a neuro at the autonomic clinic in the same hospital) consulted and agreed I fit the profile well and my pupils apparently impressed them. They ordered the antibody titres at that point and suggested IVIG if the antibodies were positive. They were negative. that was earlier this year. My cardio still felt IVIG was worth a try as it has been reported to help in many seronegative cases of AAG. While waiting to get into see the hemotologist that was going to consider trialling the IVIG, my motility hit an all time low and I wound up inpatient with severe malnutrition/hypoglycemia. They were discussing TPN and/or tube feeding at that point and everyone agreed it made sense to try the IVIG first in case it would work. basically we had nothing to lose. I had my first round (a little over 2g/kg spread over 5 days) in April/May, then followed up with 450mg/kg every 3 weeks. 7 days after hte start of the first round my blood pressure and heart rate completely stabalized. My motility picked up and my pupils started doing what they were supposed to. It was phenomenal. By my 2nd follow up dose (last week) it was clearly not working any longer - my heart rates and blood pressure readings were worsening fast, and my appetite was gone. So they have just finished up another 3 day cylce of high dose IVIG (was supposed to be 4 but i got really sick (fever, headache, aches, etc) yesterday so they called off dose 4) and will resume at a more frequent and higher dose now. The hope is that things will continue to improve over the next 6 months with the IVIG. If things do not continue to improve at this point the next step is Plasma Exchange. We will know in the next week or two which route we will be going... I will be getting a port put in likely towards the end of the month once we know whether I'll be doing IVIG or Plasma Exchange long term (they use different types of ports depending on which treatment I'll be doing). That is the short version... *sigh* what is your story? Is it posted anywhere? I'm very curious to hear more from someone in the same boat!!
  4. My tilt table did not involve any meds at all - it was just continuous monitoring while upright - that said it may be because my reaction was so violent just to being upright (within 4 minutes my BP was undetectable and my heartrated was 170+), that there was no need to use any meds to 'trigger' a reaction of any sort? I also had the same issue with being able to keep moving, but as soon as I stood still my BP tanked and my heart rate shot through the roof.... My cardio also explained it was like a blood pooling issue - your veins in your legs operate on a pressure system, the smooth muscles around them are stimulated by movement, and its that movement that contracts the veins and sends the blood to the top half of your body - when there is no movement, the blood can end up pooling (my feet would actually turn purple if I stood still). At least this was the cliffs notes version the cardio that did my tilt table gave me. It sounds like you really need a tilt table... it will be hard solid 'proof' that your doctors cannot chalk up to anxiety (in the eraly days I had a few docs play that card - It's so frustrating to know something is wrong and at the same time wonder if their right and youre really 'fine' and just have to get over it). As far as tests go it is not that invasive - there is an IV involved, but at this point, if you really want to make some headway on determining what is going on and how to treat it, you may need to psych yourself up and go through with it. Once I had my tilt table EVERYTHING changed - suddenly there was a cardiologist saying "something is very very wrong" and everyone else just had to agree... no more 'your stressed' speculation. it was a major turning point for me. It didnt diagnose anything but it got the attention of the right doctors and got me on a path where I got treatment and the right meds to get my life back until the rest of the cards fell into place for an actual diagnosis.
  5. Off meds my heart rate would go from 70's to 170's within 30 seconds of standing (from any position). On meds it wasn't as shocking (the beta blockers made a big difference) and it would go from 50's and 60's to 90's and 100's - again within 30 seconds. laying down my rhythm would return to baseline within the minute as well.
  6. It was the Anticholinergic Autoantibodies - part of the Mayo clinics paraneoplastic profile - there was another name for it but i cant think of it offhand... It is a specific antibody that is tested when AAG is suspected.
  7. Just throwing my experience out there... I was diagnosed with POTS initially in '03, then NCS, then 'progressive dysautonomia' and later 'progressive severe autonomic failure'.... all basically a description and not a true dx... all they could do was say I was broken, and getting worse. Last summer I was dx'd in Hamilton ON with Autoimmune Autonomic Ganglionopathy (clincally - by last summer I had all the hallmarks - severe orthostatic intolerace in spite of massive doses of Florinef, midodrine, NaCL, and beta blockers, severe global gut dysmotility (very nearly wound up on TPN), hypohydrosis (didnt sweat), and pupil/optic nerve dysfunction) - when my antibody titres came back negative (which they do 50% of the time I'm told) I was dx'd with 'seronegative AAG'. That was March of this year. At that point I was waiting to see the Hemo department for assesment as far as a trial of IVIG therapy as the handful of case studies out there suggest that seronegative AAG patients who fit the clinical profile well (dysmotility, OH, pupillary dysfunction, hypohydrosis) do indeed respond to IVIG and immunotherapy. Come April the motility stuff hit a crisis point and I was admitted for 3 weeks for malnutrition/hypoglycemia and they started talking about TPN and small bowel feeding tubes etc. Everyone agreed we should trial the high dose IVIG first on the off chance it did actually work. It worked. within 10 days my blood pressure did not drop AT ALL when standing (this was mind blowing - prior to this, for the past 7 years, I couldnt stand without it dropping significantly, and for the past year, it has consistently always dropped to 60's and 70's systolic... by 10 days post IVIG my systolic BP was RISING when I stood....) My motility picked up, my pupils started responding appropriately, and my heart rate stopped spiking when I stood. I even ended up dropping the dosage on my florinef and beta blocker as my BP was getting a bit too HIGH... It was phenomenal. The improvement continued over the following month. every week I was a bit stronger, my numbers were a bit better, my medication doses were a bit lower. Once I finished the first round of high dose daily therapy for 5 days, they dropped me to the 'maitenance' dose every 3 weeks and unfortunately as of this week I officially am 'relapsing' as my pressures are not as good, heart rate is higher, and other symptoms are returning - they have started me on a high dose daily regimen again this week, and I will be put on a higher/more frequent maitenance dose from here out. The plan for now is to continue this maitenance until October and reasses then. IVIG is not necessarily approved for but is used frequently off-lable for many autoimmune neuropathies - some very obscure and unheard of (like AAG)... Immune therapies of this nature (immunosupressants, plasmaphoresis, IVIG) have been reccomended for me various times by various doctors over the past decade - this is the first time we have actually taken that step and trialled one though. I am in Canada however so I know the process of getting approval/coverage is different and easier. Just my experience...
  8. It's less embarrasing than passing out in a public place believe me... You owe nobody an explanation. it's a hard place to get, but you will get there. in the end none of those people are going to remember you or hte fact that you took that seat up 2 days from now, so why should you remember?
  9. While this isnt 'common' - its not 'uncommon' either, even in healthy people. I get it all the time - i can count my pulse without ever 'feeling' for it, I can just 'hear' it and feel it, my Sister in law talks about, and my nefew (who is totally healthy) gets it. It can be related to low blood pressure, but it can also just be a variant of normal.
  10. Its been a good 7 months since Ive been here... Not sure if anyone remembers me but hey Ill update you anyways... Last fall I had my PFO repair (heart defect that for whatever reason was shunting blood and causing my O2 to drop - I was O2 dependant most of last year because of it) and it was a roaring success - at least as far as the O2 stuff goes - Ive been off O2 since I rolled out of the OR! Very happy with not lugging oxygen around!! Everythign else has kind of fallen apart though. After the heart repair my cardio and I decided to attempt a verrry slow wean off the florinef - just to see if I could get off it. 2 weeks ago my blood pressure in clinic was 80/50 standing. (thats a drop from 115/70 sitting) last week it was still 80/50 standing and we bumped my florinef dose up again. today it was 77/50. yea not going well. I feel like crap, obviously. ive started on salt tabs (6000mg a day) and midodrine as well as pulled out the compression stockings for the time being. What has us particularily concerned is that in the past my drops were always related to a crazy high heart rate (why i was classified POTS). Lately my heart rate isnt shooting up, which takes it out of the POTS category and puts it squarely in the 'autonomic neuropathy' category... and its officially progressing. So not terribly happy with that. Im off to see the mito specialist for a repeat biopsy and a consult - were all pretty much certain he will confirm I have mito. my son has confirmed mito, and it appears they have isolated the gene responsible for it in him and I (maternally inherited MtDNA defect), but my understanding is more testing will have to be done before they can make that call. Its really weird trying to switch from 'mom mode' to 'me mode' as far as doctors go. the past several years I have really let my own stuff fall to the wayside as we dealt with our sons issues (which are unfortunately progressing too fast for our liking). Its hard to step back and actually deal with my own stuff. anyways - you will likely see more of me here over the next while... im sure im in for a rough year as they want to figure out where things are nerve wise - its been years since ive had any neuro testing done, and things have clearly progressed in that department.
  11. It always takes about 2 weeks for me to adjust to a new dose and totally see how it will affect me... Ive been on Florinef (currently at 0.1mg, but ive been as low as 0.05 and as high as 0.5mg a day over the years) and the dose is changed often depending on what is going on with my potassium levels, BP, etc... even when im brutally sick it can take up to 2 weeks to start feeling benifits (and when i first started it, it took closer to 6 weeks to realise the full benefit). hormones always affect my BP's and how well the meds control them - my symptoms fluctuate with my cycle but Ive gotten good and predicting which days will be 'slow days' so to speak. Give it some time... depending on your metabolism, and your body, it could take a while.
  12. http://www.netwellness.org/question.cfm/58443.htm Definately worth followup - sounds like if it was there in the past xrays and hasnt changed over time it could just be scarring form old infections or some such, but if its new it could be pretty serious... Squeaky wheel - hound them till the tell you whats up!
  13. I am currently being investigated for this - will be seeing the Canadian specialist next month for a repeat muscle biopsy (had an inconclusive biopsy in '05 - pathology was abnormal but 'resp chain' testing was normal). My 6 year old son has confirmed mitochondrial encephalomyopathy - complex 1 deficiency (diagnosed through a muscle biopsy)- so we have been immersed in the 'mitoworld' for some time now. I actually have had issues my whole life but it wasnt until brandons diagnosis that we finally got direction to what might be the source of my issues. I stepped back from finding answers to my own health stuff for quite a while and just 'maintained' as best I could while we were dealing with my sons stuff but things have progressed (motility, orthostatic symptoms, further neuropathy signs etc) and its time to buckle down and get some solid answers for me. I have heard of (and actually met briefly at a mito conference) Dr. Cohen but i hadnt heard the comment about muscle biopsies likely being negative in dysautonomia cases - that is interesting as my biopsy was negative but it looks like we may (emphasis on the 'may' - the significance is yet to be determined) have found the MtDNA gene defect responsible for my sons (and theoretically my) mito. As far as dysautonomia/mito and diagnosis - my son has autonomic 'issues' (heat intolerance, temp regulation stuff, sweating stuff, motility stuff) but I wouldtn classify him as 'dysautonomic' at this point - his issues are hugely neurological and movement related (he essentially has the brain of a parkinsons patient). his muscle biopsy was crystal clear positive. I on the other hand have a negative (for mito) muscle biopsy and progressive neuropathy with multisystem issues (heart rate stuff, kidney stuff, gut stuff, etc etc) and honestly the odds of me having some other exceedingly rare condition (while still sharing the gene defect my son has) are astronomical.
  14. Ive had atrial tachycardia for as long as I can remember... it took a long time to figure out what it was, but Ive always had 'flutters' and skipped beats and just odd sensations as far as my heart goes. the atrial tachycardia has mostly gone away with metoprolol but i still get runs of it when my potassium drops.
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