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Everything posted by juliegee

  1. Has your HR always been low? I ask because your DX is identical to my son's and his HR can REALLY drop- into the low 30's- usually when other things are going on. He has severe GI issues, slow motility and gets small intestine bowel overgrowths/SIBO's. When that happens, his HR can really drop down. It's like a signal to us that something else is going on- some other infection, etc somewhere else in his body. You KNOW, my prayers are still coming. Heal & feel better!!! Julie
  2. Oh honey, I am sooooo happy to see you posting . I was VERY worried about such a high dose of florinef. I am so thankful that you had the courage to talk to your doc and that he listened. You are very blessed to have such wonderful help- at the hospital and from your church family. So may of us here care a lot about you too I will keep the prayers coming. Try to relax and heal. It sounds like you are in good hands now. Healing hugs- Julie
  3. Mine did- lasted weeks. I had a reaction to a beta blocker that caused the whole bottom part of my face to go numb. It felt like it was freezing, but I was warm. It was very disconcerting and frightening. It lasted weeks- the severity would wax and wane. THAT'S what finally clued me in to what was causing it. When I lowered my BB dose, it improved. When I raised it, it worsened. It wasn't until my mouth, tongue, etc. started to tingle/go numb that I finally realized- ALLERGIC REACTION. It also caused my autonomic symptoms to get worse. "Allergic" reactions can cause paresthisias & neuropathies... they can also stem from other issues. Hope you figure it out. I know it's a weird and scary symptom. Hugs- Julie
  4. Albuterol and Xopenex (like Ventolin) did NOTHING for my breathing problems, but did worsen my tachy Your friend's theory may be right on- for him. POTS is a symptom and there are dozens of etiologies- makes it impossible to generalize.
  5. So happy you are feeling good and finally have a doctor who will listen I worry that it might NOT have been a stomach bug- but rather the hypertensive crisis that caused the vomiting & broken blood vessels on your face. The way I am understanding it, at high doses florinef can cause a serious depression of your body's cortisol and can cause LOW blood pressure & a host of other problems. Maybe consider sharing that idea with your nurses or doctor and see if it has any merit. Let THEM decide. I just want you to be safe. PRAYERS & Hugs coming your way- Julie
  6. This may be a dense question- BUT how do you know MCA patients don't have a temporary hypertensive episode prior to hypotension in response to excessive nitric oxide or hydrogen sulfide. We have so many vasodialating mediators bouncing around at any given time- it's impossible to determine WHAT mediator is causing WHAT symptom... right? BTW, I recently started turmeric again- AMAZING results. MY excessive nitric oxide is easing up and my little masties are happy-er Yeah, your BP observation is interesting. I also feel good, more energized, with slightly higher BP. That's kind of how florinef therapy a la Dr. Rowe works too. He seems to get my son's sitting BP a smidge high & then he can tolerate being upright longer w/o lightheadedness and syncope.
  7. Rama- "it seems odd that postural hypertension would occur in mast cell activiation disorders in response to circulationg vasodilators but not in other situations where there are circulating vasodilators." ______________________________________________ If i am correctly understanding your comment, I think the postural hypertension occurs as a compensatory response to the plasma loss caused by the vasodilators. There appears to be a point at which this is unsustainable and BP will ultimately drop thus explaining the highs and lows in response to the same vasodilators.
  8. You KNOW that I'm not a doctor. I don't even play one on TV I'm just a Mama, whose had a very sick boy, like you are and I care about you. PLEASE talk with your doctor about such HIGH doses of florinef. It can be very helpful at low doses, but it can actually have a paradoxical effect at high doses like you are taking. In other words, I worry that it may be what is making you sick http://home.intekom....b/florinef.html "Small oral doses of fludrocortisone acetate produce marked sodium retention and increased urinary potassium excretion. Fludrocortisone acetate also causes a rise in blood pressure, apparently because of these effects on electrolyte levels. In larger doses, the steroid inhibits endogenous adrenal cortical secretion, thymic activity, and pituitary corticotrophin secretion; promotes the deposition of liver glycogen; and, unless protein intake is adequate, induces negative nitrogen balance." At the very least, show this to one of the nurses that are trying to help you just to check IF the high doses of florinef could be causing your symptoms. From everything you have shared, it sounds like you have been very sick, but "stable-ish" your whole life. It wasn't till you started the high doses of florinef that this crisis occurred- right? Once again, forgive my meddling- I'm just worried Healing Hugs- Julie
  9. Honey, how did I miss this? WHAT was your episode? Salt & potassium being off could EVEN cause your current symptoms. I have been very worried about the high dose of florinef that you have been taking. THAT can even cause the salt & potassium to be off. You and I chatted about this before you ended up in the hospital... Remember the suggestions via Dr. Rowe's brochure about supplementing with extra salt & potassium? When my son and I have been very sick (like you are) I have done my own research (really had to as our local doctors were at a loss) and always found answers that have led us to the right doctors and treatments. You are blessed to be able to do that in the hospital and to have such caring nurses helping you. Please Know that I am praying for you to find the answers you need. Gentle Hugs- Julie
  10. Saw that. Can't wait....though I doubt we'll learn anything new. (Gosh, I sound like such a cynic Naw....cynics don't say GOSH.)
  11. Interesting, Anna. I get the swings too- Issie- especially during a reaction. My BP tries to drop due to plasma leakage, then my HR kicks in and my BP rises- this goes on, back and forth pendulum style. I'm DXed with MCAS/MCAD & I don't get super high readings from just standing BUT I also have NMH/NCS- so I wonder if that masks it for me. We are not easy creatures to figure out Thanks for sharing, Anna!
  12. Hmmm, hives and a numb face??? Sounds classic for a reaction to something. The medical literature doesn't usually describe paresthesias and nueropathies as being the result of "allergic" reactions- BUT The Mastocytosis Society lists them as classic symptoms. And, many who suffer with mast cell issues recognize a numb face as clear signs of an allergic reaction. The weird thing about allergies or reactions is that they can develop ANY time to something that you've been tolerating for years- making it really confusing to figure out what's causing what When this happens to me, I take an OTC antihistamine and see if it helps. If it does; you've figured out WHAT is happening. The WHY is often harder to untangle. Also, if your lips, tongue, mouth or throat starts to tingle- get help pronto. Hope you figure it out- me too with the arms, legs & feet too.
  13. Prayers to you, Lissy. Post when you can & let us know how you are! Oh dear- I just saw your second post. How awful to postpone your trepidation for a few more days. Yeah, a fever in us autonomic folks doesn't necessarily mean much Checking your white count might have been a better idea.... More prayers that it's perfectly uneventful & you feel MUCH better (& lighter )afterwards. Hugs- Julie
  14. YES- for me it's a sign of an allergic reaction. It generally happens to my chin. Have you had any unusual food or new meds?
  15. So sorry Peace That sounds awful & it's even worse to think that he may not have gotten enough tissue for a good biopsy after enduring what sounds like a pretty substantial plasma loss. For my son, I have always E-mailed his ANS doc at Hopkins & gotten instructions that I passed on to his docs before surgeries, procedures, etc. IF the doc doesn't seem to take it seriously beforehand, we move on- really. It's so much easier to be assertive for my son; than for myself I know lots of Moms can relate to that one. Dr. Rowe's instructions have always included extra IV fluids, i.e. several bags throughout. Mack's doc have usually opted for general anesthesia for even "minor-ish" procedures- like wisdom teeth extraction & nasal cauterization, etc.- as they say they have more control over his vitals and airway that way and he is ultimately safer. Do you have a good ANS doc that is in charge of your treatment plan who could write instructions? Hope your biopsy was good news & you are feeling OK after the procedure. Julie
  16. Thank you for sharing, Tonya!!!
  17. Or, you could be having a reaction to the Coumadin and Lovenox... Wonder if an OTC antihistamine would help? I had total GI paralysis (still have colonic inertia) after a GI surgery. It was awful. I am so sorry that you are living with it . Check out this article, might give you and your docs new avenues for treatment. http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm All the best- Julie
  18. Ana- Makes me VERY sad to hear all you endured and are still enduring... We MUST spread the word about mast cell disorders for all of the reasons that Doozly described. A patient, who is susceptible, has NO idea that they will be exposed to possiblly fatal allergans during CT's/MRI's and biopsies, etc. It sounds like frontline personnel has little idea of how to properly treat a reaction should it occur. I have learned to pre-medicate before any of the above AND I carry extra atarax and my own epi-pen to the hospital with me....but don't have access to it in the MRI tube And, Doozly- I am so happy that my posts had an impact on your diagnostic process. VERY gratifying. About 3 years ago, I took a huge leap on this site when I continued to read about other members describing their "POTS attacks/autonomic storms." I said , "Gee, that sounds an awful lot like anaphylaxis to me..." I first learned about MCAS/MCAD from DINET and a member, who is no longer active, Bronwyn. She patiently answered all of my questions and taught me so much. I am deeply appreciative. Kazoo & Bananas- Sorry we hijacked your thread & hope we've answered your questions
  19. YES- I know someone in the radiology field who wants to spread the word. I will PM you,
  20. Here's s good article that describes the cardiovascular implications of anaphylaxis- which CAN be present w/o the cutaneous stuff. Wish someone would spread the word to Emergency Personnel http://f1.grp.yahoofs.com/v1/4FlJT_WT5OMbBWQ45GcM9u_OvzKjlImKdOts-vU7pwXinpXmVID2ZuCI9-0qfcQOfLHDBzSop72FnCqY5Thxgw/2005_Brown_AnaphylaxisCVS%5B1%5D.pdf Very interesting that they repeatedly refer to the importance of theTrendelenburg position (supine with feet elevated)- DUH! I've always instinctively fallen to the floor during anaphylaxis before using my epi.
  21. Thanks Doozly, I KNEW I'd seen that somewhere. I think what is so confusing to Emergency personnel is that some of us can present at Stage 3, without the cutaneous manifestations. The TMC brochure says that the stages CAN occur on a continuum; which also means that they CAN occur out of order- right?
  22. Doozly, you've "chatted" with Anaphylaxing about the whole contrast documentation-RIGHT??? Wow, your overlap of interests is mind blowing Yeah, I JUST learned about the 4 stages of anaphylaxis too. Do you have a link that describes that? I figured some doc used those terms- "shockers/"leakers." I just wanted members here to be aware that those might not be official medical terms and most docs won't know what they are talking about- despite the fact that they describe us perfectly. Another phrase that I've coined is "low grade anaphylaxis"- very much akin to chronic low level leaking Yeah- GI issues- SOOOO linked to mast cell disorders & so few realize it. Have you seen this article by Dr. Alford? Very comprehensive & informative about how mast cell activation can manifest: http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm I appreciate all of the good info you are sharing, Doozly. Spread the word. I NEVER suspected MCAS/MCAD either; but once I did ALL of the pieces of my illness came together and lead me to a VERY effective treatment plan.
  23. That is great Bananas- so PROUD of you!!! Kazoo, once you get the doc's OK to exercise- truly one extra step every day will be PROGRESS. If you stick with it; you will see great progress over time. I think my pineal cyst is stable. I haven't had it imaged in years, but they did follow-up with MRI's every 6 months for a while. My neurologist has since retired. BUT I did see a specialist at Emory who told me to roll my eyes back in my head (you know the stereotypical teen-age look ) and as long as I can do that; my cyst is OK. That's MY kind of low-tech testing
  24. Good to have THAT behind you. So confirming to have those abnormal tests! You doctor sounds wonderful- hope it all leads to a better treatment plan!!!
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