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midatlanticdinetuser

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About midatlanticdinetuser

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  1. 60/40 and hr 40 and passing out with sweating and crying at 45 minutes with no IV meds at all to induce symptomswhen they stopped my TTT.
  2. So...I want to address some of the things in this thread...But I am really worried about being misunderstood or offending anyone...I hope that what I say will be received in the spirit of just me sharing my own experiences... And not as me making any judgments or implications for anyone else...I would never try to discourage any woman from motherhood. It has given meaning to my life in my most desperate times, the way nothing else ever could. But it is also the most physically and emotionally draining and exhausting thing that has ever happened to my body, directly causing me extreme harm, in financial, emotional, intellectual and physical ways, which I cannot overemphasize to anyone with chronic health issues. Pregnancy itself was so hard the first time, that I swore I would never do it again. Then I ended up remarried to a man with no kids who wanted them, and the second pregnancy was 100 times harder. Marriage and in laws and parenting are difficult in the best of circumstances. 25 years old, long distance, the word disability, and living at home with parents (and questionable boundaries about appropriate topics for family dinner conversation when you are not present), are all red flags for why I am glad to hear that you and your fiance are taking your time to prepare for marriage. However, I must also say, that the longer you wait, the more difficult pregnancy could be on your body, and the less energy you may have to parent an active toddler without family support. Family support will be very important when you have babies. Including in law support. We live far away from family, and my husband has to take a sick day to watch the baby when i have complex doctor appointments. I struggle with my mother in law but I could really use help. Try to see this from the mother in law's perspective. She doesn't want to see any of her kids struggling or stressed. The word disability is terrifying to a parent. My husband is taking all this very hard. I wasn't actively "sick" when we met and married. He needs time to process this, for example, yesterday I raised the idea of getting a handicapped tag for the car. He completely freaked out. Your mother in law needs time. And your fiance needs to stop raising the subject of your health status at family dinners when you're not there. Also. Please look into the genetics of how well your methylation pathways function before trying to conceive. I don't want to give formal advice, but my oldest is on the spectrum and I recently learned I have methylation mutations. Cerebral folate deficiency has been in the news just this week. I believe the connection is real. I wish you strength and positivity and a healthy marriage and healthy babies. You can absolutely handle it, with preparation, determination, and a huge amount of family support!
  3. Yes, this has recently started happening to me on the left arm and somewhat also left leg. It is very disturbing. I'm assuming it is considered neuropathy?? I'm very upset about it.
  4. I just started the process. There are actually quite a lot of other genetic tests they can do besides EDS.
  5. Katy and Ashley and everyone, I had an excellent experience today at university of Maryland genetics clinic. I saw Dr. Streeten. She is board certified in endocrinology, genetics and pediatrics, with special interests in connective tissue and vitamin D disorders. Jackpot!!!!! She is taking care of my referral to Dr. Russell in the neuromuscular clinic and ordering tons of tests for me and taking me seriously! I am so relieved. Like I finally have hope. I will update more asap.
  6. I'm so sorry. This is why I refuse to fill my midodrine. My cardiologist who prescribed it never called me back after I googledthe urinary side effects. So I went to my psychiatrist as and I'm starting wellbutrin and Focalin instead. As a baby step. I have been in your exact situation, ignoring urinary symptoms because I have cystitis and neurogenic bladder...then having to beg my husband to take the day off to take MD to the ER for iv fluids and pain meds and antibiotics. I never want to go through that again and I will not be bullied into anything by doctors anymore!!
  7. I felt all the feelings watching this...The curse of "looking like" an attractive, healthy, young female...I so wish I lived near Dr. Svetlana or Dr. Thompson. Thanks for making this video resource. I am going to be forwarding it to my current cardiologist and the procedural care team at the hospital where I had my tilt table test last week. They are in dire need of sensitivity training. That procedure was much more horrible and traumatic than it needed to be.
  8. Katie, Thank you for your response. He is one of the only docs for adults in our area, as you know. He does not, however, take my insurance...So if my UMD referral does not work out, he is my next call...I hope you are having a good experience with treatment.
  9. Thanks, everyone...Katie, are you being treated locally? I could also use a backup doctor name in case umd doesn't take me...I was about to go get the midodrine filled, but when I looked it up, it has significant contraindications for urinary retention and interaction with Vyvanse...My cardiologist is very scatterbrained, and I am disturbed by her not addressing these with me. I will have to call her because the side effects of Florinef are even more daunting to me.
  10. Hi everyone, This is my first post ever. I'm very new. Please forgive and alert me to posting mistakes herein... I'm s 35 yo female. I finally was able to confirm my POTS diagnosis via TTT yesterday. (There are no words to describe what a miserable experience that was. My head still hurts 24 hrs later.) Anyway, I insisted on the test so that I could potentially get a referral to the Dysautonomia Clinic at University of Maryland. I'm wondering if anyone has any experience with Dr. Russell or this clinic? It is quite literally my only option, as I am quite unable to pay cash to see someone in Annapolis, and quite unable to leave this area for care, as I have a very active 1 yo and 9 yo. I'm quite emotional to finally have some proof to the contrary of all the times I've been told by various neurologists, psychiatrist s, cardiologist s, urologist s, obgyns, allergists, ENTs, the guys who do colonoscopies ( my brain fails me at their titles) and primary docs- how very physically "healthy" I am. I'm very anxious about being denied a referral. I also recently learned I am homozygous for MTHFR a1298c. And of course my primary doc is on maternity leave. I'm trying not to obsess but I'm scared. I'm very anxious about starting midodrine. Maybe I'm being pessimistic because medications normally havent helped much over the years. Anyway, thanks in advance to anyone who reads this or has insight to offer. Is there an easy way to find users who live near me? Thanks.
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