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MeganMN

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About MeganMN

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  1. Hello All, We spent a week at Mayo Clinic and I would love to say that we are closer to answers, but are probably not! I do, finally, have a future appointment for a Tilt Table Test, so that is kind of exciting. The Pulmonologist that I saw was a little bit dismayed that I had been so far down the POTS road without a formal evaluation by a Neurology Specialty. I continue to have irregular orthostatic tachycardia, it is unpredictable and erratic, which is better than constant! I am still being worked up for other things (mild Hyperparathyroid and Carcinoid Syndrome) and will see how it all plays in to the Tachycardia, if at all. Hang in there, all! Megan
  2. Thanks for this amazing thread, @bombsh3ll I hope that you can finally get the help that you need. I have thought about this thread a bunch. We have actually finally determined that I have a co-existing condition (Carcinoid Syndrome) but they have now actually decided that my POTS began as a result of a concussion! I had a vasovagal event at work and hit the deck, slamming my head into the ground and ended up with a concussion, have had POTS ever since. I wonder if I had a leak based on the postural headache and other symptoms that resolved as soon as I lay flat. The headaches have gone away, the nausea is better, the fatigue and brain fog are better. The tachycardia is now intermittent and seems to happen less and less. It is crazy though, how it has been almost a year and no one really put all that together. When I do the research, it is CLEAR that post-concussion syndrome can result in POTs and there is a clear, proven link between the two, yet it is something that no one mentioned until I saw an Osteopathic doctor who said that maybe the POTS did not cause the fainting, but the fainting caused the POTS. I never had any of this before I passed out and hit my head! Thanks so much for the update and the info! Meg
  3. Thanks! @POTSius and @Stark It was the Plasma Histamine that I had drawn, and that is the level that came back as High. The Tryptase levels have all been normal. I am just really not sure where to GO with all of this! They have been testing and testing me for a possible Carcinoid Syndrome and looking for a NeuroEndocrine TUmor (which is the main differential diagnosis that mimics mast cell disease). There is a doctor at the University of Iowa who is willing to see me and thinks I have an undetected Carcinoid, but another NeuroEndocrine Specialist that I have worked with thinks it is NOT a Carcinoid/NET, but is more likely to be MAST Cell Disease, and I have no idea what Mayo will do. I really cannot afford to run around to a bunch of different hospitals as this has already been dragging out for a year with thousands of dollars of testing. I have been self-treating with H1/H2 blockers and Quercitin. I am now having to take inhaled steroids because of an unrelenting cough/wheeze with new asthma diagnosis. I began searching the Mast Cell Pathway on my own because no one seems to know what to do with me. I have considered going to see the Allergist in the area that deals with Mast Cell Disease, but am getting tired of specialists who just scratch their heads and take shots in the dark! Is it a Carcinoid/NET? Maybe. Is is Mast Cell Activation and POTS? Maybe. But I do not want to keep taking meds and not knowing what we are treating! Anyway, thanks to everyone for the replies. Meg
  4. Hello all, I am still having more and more and more testing and am scheduled to go to Mayo-Rochester in October. I have had recent testing still trying to tease out MCAS/Mast Cell Disease versus some kind of Carcinoid/NET. I am looking for your experiences with MCAS/Mast Cell lab results. I have had two negative serum tryptase levels now (2.2 and 1.8) and a negative urine Methyl-Histamine, negative Serum Prostaglandin D2 levels. Does anyone ever get a urine Tryptase level? The only lab that came back abnormal was an elevated Serum Histamine level (1.05). Can an elevated Histamine alone have any meaning for diagnosis without the tryptase? Thanks. Megan
  5. Hello gang! I have been off the radar for a bit but feel like many of you are in my circle of support. I am continuing to get worked up for both Carcinoid Syndrome, Neuro endocrine tumor, and either normal calcium hyperparathyroid or secondary hyperparathyroid from low Vitamin D. I am waiting for an appointment at Mayo with an Endocrinologist and have been going to the U of MN for endocrinology. I do not have much tachycardia randomly these days, it coincides more with other episodes of flushing. I am less tired with iron and Vitamin D but continue to struggle. I think of all of you often and hope everyone is chin up!
  6. This is going to be a long post, but it is something that I feel like I need to say. Tonight we had a camp fire in the back yard. My seven year old brought me flowers. I played frisbee with my husband and laughed like I have not laughed all winter. My three year old sat on my lap while I braided flowers into her hair. My five year old rolled down the hill in a toy shopping cart while we all watched with happy hearts. This is what life is. This is what I want to be engulfed by. Instead, the pause button hit last November when my mom died the same day that my body began to fall apart. First I was diagnosed with inappropriate tachycardia, thn with possible carcinoid tumor, now Carcinoid syndrome, and a side of hyperparathyroidism. Doctor after doctor after test after test. Research and forums and Internet and so....many.....ologists..... Cardiologist, Neurologist, Oncologist, Endocrinologist, Gastroenterologist, Pulmonologist. What they all forgot about... The LifeOlogist. My life continued on. My kids keep growing and needing and loving and living. My husband keeps needing and loving and living and being by my side. My job, my family, my church, my friends. They kept moving and I suddenly stood VERY still. I became an expert on HIAA and Chromogranin and PTH and Calcium and NET and Gallium and anxiety and depression and fear.... But tonight, sitting by the fire, I realied that none of this defines me. It certainly limits me. It makes me tired. It makes me afraid. But it IS NOT me. I am a mother, a wife, a nurse, a friend, a reader, a gardner, a daughter, a sister, and I am alive and thankful to be! this IS what the doctors forget. They forget to tell us how to go on with some diagnosis that may not be fixed with a cast, or a surgery, or a pill. It may force us to accept a new normal. But it doesn't have to define us. For the first time since last November, my life continued to play with me in the frame, instead of watching from the sidelines while the scenes played on without me. These are the things I will talk about when I go to the doctor. Okay, my labs showed this or that, and you think this or that, but tell me how to keep LIVING and LOVING. That is what I care about doctor... So when you tell me you will see me again in 3 months or 6 months, or whatever, I will tell you to explain to me how to watch my life go by while the pause button is on. Or, better yet, you can put your head together with me, and help me figure out how to make the best of this crappy disease and LIVE.
  7. Update...went to the University of Minnesota today for my visit with Endocrinology. She was super nice and super smart. Frustrating nonetheless though because of the time frame. She did confirm that she is officially diagnosing me with Carcinoid Syndrome and may end up treating me even though they cannot find the source. At this point, she thinks my parathyroid issues are related to the Vitamin D and wants to just recheck everything in two months. She basically said that there is a high probability of a carcinoid, and finding them can be pretty tough. She said that she is still on the fence about the parathyroid and will recheck labs today and again in two months. For now, we watch and wait, and I pretend that I am not running on empty!
  8. @nik1980 yes- exactly what you said!! I have been getting more and more exhausted. Thankful for this group where I can whine un-judged!
  9. thanks @bombsh3ll! Two more days until we go down to the University of Minnesota. Feeling exponentially worse since Vitamin D supplementation. I am getting a 24 hour urine calcium today and I suspect my serum calcium will be higher now. I have no idea what to expect. They will have to redo all the labs after my D comes up, I am sure. But really, I have no idea what to expect! this has all been so crazy. Will keep you posted!
  10. Well, the saga continues. I see the NeuroEndocrine Specialist on May 21st and in the meantime, my Parathyroid Level came back a second time super high, but normal calcium, slightly low Vitamin D. Am adding Vitamin D Supplements. This is all just such a weird thing....
  11. Hey gang, Wanted to ask about a weird symptom set that I have been having. Intermittently for the last year or so, I have been waking up in the middle of the night with a weird symptom set and wondered if anyone else experienced it. I wake up with a start with tachycardia. It almost feels like a panic attack but it wakes me from a sound sleep. I get tachycardia, shortness of breath, epigastric pain. Then I eat some TUMS or Mylanta, and have diarrhea (no cramping) then all the symptoms slowly subside. Weird. Just wondering.
  12. Thanks to everyone for your wonderful words! Sometimes it helps just to be able to vent it out there. Counting down the days until I see the Specialist. At this point, I am receiving no medications for anything, because no one knows what they are treating. But man, I am TIRED!! Thanks everyone!
  13. thanks for the replies! My husband and I are trying to figure out what to do. I am beginning to get concerned because my fatigue and brain fogginess is definitely affecting my job. But I am the only one working right now and my husband cannot make more than maybe 25% of what I make as a nurse. On top of that, my job does not offer any short or long term disability! Right now though, I feel like I may be in danger of getting super sick. So, we are trying to come up with a plan. Just feeling like my mental state has taken a huge dive with all of this. I am so tired. Everything that I usually maintain is falling apart.
  14. Ugh. I am at a serious low spot in this journey. Thought I was there already, but so much worse. Things have just gotten so messy with all of this medical testing and appointments and kids and marriage and work and LIFE! Going down to the U of MN to see a neuroendocrinologist in two weeks. Feeling worn out and jaded, hoping for answers, but tired of just getting more questions. My adrenal function is in question, my parathyroid function is in question, and I am TIRED. That is really the crux of it all. I am totally losing the ability to function. It feels scary. So much about all of this is scary, for so many of us. We are all at different places in the grieving process and right now I am low. If I had some Energy, that would help!
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