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Everything posted by MightyMouse

  1. Welcome to our small corner of the internet... You're among friends who are happy to share what they've learned with you. I know I've spoken with some of you via messages on fb this month, so I'm glad you found your way to us here, as more of our members hang out here to talk than we have chatting via facebook. Nina
  2. Personally, I've tried Tumeric. I can't really tell if it helps or not.
  3. I had two rounds of steroids recently--once in late Oct 14 to treat disc and nerve pain/spasms, which was given via epidural, and then again in Feb orally for a week for same reason. I had never had a problem with steroids, injected or otherwise, but these past few times sent me into massive runs of PVCs, tachycardia even while laying down, and tetany (random muscles spasming and causing my limbs to jerk or move involuntarily). The steroids caused me to have very low serum potassium and magnesium, requiring IV infusion 2x to stabilize me. I've learned now to start with smaller dose of whatever I'm supposed to be taking. I also recently had a horrible reaction to Lyrica--made me manic. Very fast talking, very active physically, and actually felt awesome, but when it wore off every part of my body hurt b/c I over did my physical activities for about 24 hours. Like Katie, I feel for you. So frustrating sometimes. For me, I never know what to expect when taking something new or something I haven't taken in a long time--it's always a surprise what happens afterward.
  4. Hi Pumpkin, I am also petite and have dangerous sensitivities to many medications...morphine is among them, as is oxycontin and codeine. As I have a known genetic disorder called SHOX, I know my collagen is defective--collagen is one of the places in the body that is associated with MAST cells. I also have trouble with local anesthetic; the normal novacaine or lidocaine just doesn't get me numb. I've also woken up during endoscopy. For me, I have a short list of pain meds that work: most of my pain is from spasms--so benzos help, but I try not to take them b/c they can be highly addictive per my doc. NSAIDS like Alleve work amazingly well, but bother my stomach big time. Dilaudid is my go to med if I'm in the ER, but only time I've had it at home was post-surgically. Nina
  5. Yes, she is on our medical advisory board, and has helped us by providing answers to our "ask the professionals" section in our newsletters...and she's was incredibly helpful in making our video, called "changes", which is available on youtube. http://www.dinet.org/index.php/information-resources/pots-place/pots-video I know she is mostly doing telemedicine right now. -Nina
  6. Exactly my response dkd... You really need to ask your doctor. For my test, I was told to be off everything. It took a month to go off of florinef, and I had to be done weaning myself so that the last dose was more than 2 weeks before the testing. I was told to do by slowly tapering down the dose. I was told not to stop florinef suddenly. Then for 24 hours before the test, I was not permitted to take midodrine, caffeine, and a few of my other meds that I cant recall now b/c it was 15 years ago. As I recall, the only thing I was allowed to take on the day of the test was water, and nexium (may have been prilosec, nexium's predecessor)...no food, no other drink than water the morning of the test, nothing to eat after midnight. But...that was my doctor's instructions... I can tell you that typically, most TTT's are done w/ no meds, but again, depending on other things going on with your body, that might not be safe for you, which is why I would strongly encourage you to talk to the doctor--or if they gave you paperwork about your testing, read it carefully, as it may give you specific instructions. Nina
  7. I've had so may MRI's that I've fallen asleep inside the tube. I have a form of dwarfism that gives me nearly identical problems to Ehlers-Danlos hypermobile type. Spinal joints can be hyper mobile just like other joints, but more problematic and the spinal cord and associate nerves can get pressure on them. I hope you're able to find a doctor who "gets" what's happening with you and helps you feel better.
  8. So, if I follow all those steps, here's what I see: http://s85.photobucket.com/user/ninaismighty/media/DINET%20Photos/Screen%20Shot%202015-06-13%20at%208.53.25%20AM.png.html
  9. Here's how to check accurately: first, go to the gene broswer, and open up gene x by clicking on the link for it. Then, open the any of the intergenic sequences you see listed under the "gene" column. Click on the reference link for dbSNP lookup, which takes you to NIH's gene library to cross search your own data. Scroll down to the integrated maps section, where there is a search box that has the word "find" on it. Type in the gene you're looking for. When I type in SHOX, a pop up search window shows from 624344 to 659411 are positive for SHOX. I have 14 pathogenic sequences (show up as purple blocks). To see the details aobut them, you close the pop up window go back to the top of the gene map, immediately left of search box you used, mouse over the letter and number sequence right of the blue left facing arrow, which will open it up to "full view" (entrez view is the standard view). Once the map displays, If you mouse over blocks that are purple, blue, green, it will give you the exact alleles that are pathogenic, suspected pathogenic, benign and unknown outcomes. Entering SHOX in 23andMe's search box comes up with nothing for me too, but I am most definitely positive for SHOX
  10. I have this too, and I do not have any tumors (usually the tumors they're looking for are pheochromocytoma, which I defnitely do not have). For me, it's my body's normal reaction to standing.
  11. I found my own dwarfism gene on the X chromosome a few years ago using 23andMe as well. I ran it through free gene processing on NIH's gene database and then wen through the snp's myself (an snp is a segment of genetic material), segment by segment. About a year later, I did the same thing you did to check my work, running through the Promethease system for a small fee, which replicated my own findings, but also showed me a few other things--for example, I carry a bunch of mutations for hemochromatosis--and now it makes perfect sense why my blood iron readings have always been high. I've shared my findings with my physicians. For dwarfism genes I carry at least 9 pathogenic alleles for SHOX, a bunch of probable pathogenic alleles, and a bunch with unknown outcome. "Pathogenic" means the genes cause problematic outcomes. You may recall dominant versus recessive genes from your basic biology classes--the problem with my pathogenic genes is that all them fall in a location that's called "pseudo autosomal dominant region" of X. This means genes in this area are expressed as if they're dominant... SHOX, like EDS and Marfans, causes bone and collagen tissue defects, from fragility of blood vessels, hypermobile joints, etc. When I went to my doctor with my info, I printed out a screen shot of each of the SHOX related gene's location on X, the associated report from NIH for each individual pathogenic and probable pathogenic SHOX gene, along with the general SHOX gene report from NIH, here http://ghr.nlm.nih.gov/gene/SHOX I am curious. How have your current medical team members responded to your findings?
  12. http://www.dinet.org/images/newsletters/2015_Spring_Newsletter.pdf Happy reading!
  13. Not in heart failure, but I'm having major heart problems and may need catheterization soon if we don't figure out what the heck is causing all types of dysrhythmias. My 23 hr Holter showed 561 ventricular ectopic beats, most were PVCs, 132 late beats, SVE, bigeminy and trigeminy, PACs, atrial runs, and more than half of the events happened between 11pm and 5am, while I was sleeping. I've had problems with low serum Mg and K, as well as a slightly off thyroid reading... but we've been treating that stuff... I understand your frustration and the impact on your life. I've been short of breath for weeks, I turn bright red all over, sweat, and have nausea and dizziness. My biggest worry is that I'll end up like my dad, paced and ICD... granted, I'm a nonsmoker, and average drinker, so that makes a difference as he smoked for over 40 years, and drank very heavily until he had a massive heart attack in his early 60's. Dr. Oz was his heart surgeon 2x; He probably would have died b/c no one else would take him as he was too high risk. Here's the thing with being paced...they often do an ablation first...and for many of us, the tachycardia is FUNCTIONAL, in that the heart speeds up to make up for dropping blood pressure. When you zap the sinus node, it can no longer shoot the HR high enough to make up for the loss in pressure, leading to permanent problems with fainting and dizziness. It's a complicated issue, b/c some folks need the ablation regardless of their other diagnoses, just to live. Hang in there and hugs Nina
  14. And, there are other types of autonomic dysfunction than just POTS... NCS, PAF, etc. Descriptions of each are on our main site.
  15. narrow pulse pressure means your diastolic and systolic numbers are too close to each other. Normal is 120 over 80, or 40 pts apart. You have a few readings that are between 11 and 15 points from each other--it makes for very inefficient blood movement through the body
  16. That is quite low. My lowest measured while still conscious and standing (but shaking, sweating and feeling horrible) was 30/--. That's right. Just 30 over unmeasurable. I hope I never get that low again! I was off of all my meds in order to participate in testing.
  17. Yes, the Tilt Table Test is one of the primary tests used to make a diagnosis of POTS and/or NCS. Catecholamine testing is also common (a blood test), and for me, they also did a nuclear medicine blood test that checked what was my total circulating blood volume (mine was quite low). On our main site, you can find a list of the common tests: http://dinet.org/index.php/information-resources/pots-place/pots-detection and also there are some good summary medical articles that describe what most doctors should consider when they believe their patient might have POTS. This particular article was written by one of our medical advisory board members, Dr. Raj. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/
  18. My husband got a concept II also, on Craigslist, used... I see a theme here. I can't use it b/c I have nerve injuries that are healing, but it's a great machine. I also have had an inexpensive recumbent bike (was 175$ new, incl shipping). I loved my bike, but sold it when I moved b/c it was too heavy for me to move it.
  19. Courntey, hello again-- Katybug brought up something that I wanted to chime in on too. I do yoga and have found that it gives me some of my longest lasting good effects--the meditative piece helps with my everyday focus and keeping me from getting too emotional in situations that life throws my way (emotional events can trigger huge autonomic response). Yoga doesn't require you to do anything that can harm your body if you follow the basic rule that it is YOUR practice--you only push to YOUR edge, not through it or past the edge. Currently I'm recovering from a serious nerve injury that occurred at work last October so I can't do my typical practice because I can't do any weight bearing on my arms until things settle down; it's been tough because as a result, I've lost strength, but worse, I've lost the joint stability that the muscle strength gave me. My neuro surgeon used to say to me "keep up with the yoga because it's keeping you out of my operating room". It's nice to read that you are able focus on what you DO have that's amazing. I never had kids of my own, but I am now step mom to two adult children--kids don't give you much time to wallow in worry, right? That's probably why I've stayed working in special education so long--many of their challenges make mine look like tiny problems. That doesn't mean I can always push through my symptoms and work --sometimes I end up laid flat out--like last week. I worked my first full day on Monday last week, and got through the work day, but was so exhausted when I got home, that at 4:45 pm, I was in bed, and shortly after, sleeping. Nina
  20. Hi Lisa, There could be so many reasons for why you're feeling the way you do, and I would encourage you to find a doctor who is willing to work together with you to figure it out. Sometimes it's a matter of finding better treatments through trial and error (under care of a doctor). Other times, there's a problem that has yet to be diagnosed and addressed. I will tell you that in the years I've been on this site, that many people here share some or all of your symptoms. I would encourage you to ask your questions of others here, either in topics you see that interest you, or start your own topic. If you're not sure how, see the topic at the top of the forum called helpful hints for forum participation. Welcome!
  21. I have a collagen defect that is not EDS but shares lots of same problems. I've never read anything saying that people with hypermobility had shortened life spans. There's no way for anyone to say if your autonomic problems will ever go away, EDS or not... As for getting worse, my understanding is that EDS isn't progressive the way cancer, ALS, Alzheimers are. However, aging may affect how much joint/bone page you have b/c of repeated injury, inflammation, etc. as a result of joints moving too much and getting injured frequently. I will be 50 this year and I have lots of osteo arthrictic changes and associated aches and pains. As I've aged, I can tell you two positive things from the collagen defect. 1--my skin looks much much younger than my actual years... and 2) My tolerance for standing has improved a little over the past 10 years --- which maybe the normal hardening that happens with aging veins and arteries isn't bad a thing for me? Who knows... ? My only caution here is that hypermobile type of EDS is what I'm referring to. People with vascular type are definitely at greater risk with age (this type has a genetic test available).
  22. Yep--same issue for me before i had my fusion at c5-6 in 2002. This past year I've had some issues reappear, but so far not as bad as 12 years ago.
  23. I should clarify...I was okay at 6000 ft, but at 11500, I was ill. I did manage to still do a little bit each day at high elevation, but I had to move slowly and carefully. As I only stayed a week, I cannot give you an idea of what it would have felt like after adjusting for longer
  24. I just got back from high altitude in PerĂº and I really struggled. I needed a great deal of extra sleep, and had many near faints, and would have fully fainted if I was not so aware my personal signs that it's about to happen. My heart rate stayed in tachycardia, even when lying flat.
  25. stomach pain, nausea, water retention/bloating/swelling are all possible side effects
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