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CallieAndToby22

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About CallieAndToby22

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  1. Yes I figured out it was hyponatremia and called my PCP. We're basically waiting on the labs I got drawn this morning. Terrible terrible disorder. Do you guys know if it can increase your other medications, especially psychotropic meds? I'm going to contact my psychiatrist. Thank you. I have no idea why my urologist put me on this knowing I have dysautonomia.
  2. Yea it doesn't stay long. But honestly nobody is helping me. I'm not sleeping, I'm extremely over sedated, I feel very very depressed b/c I can only lay in bed. Passed out twice. It has done something with my medications. 5 days off it and no better. I need help. I can't even start cancer treatment until this is taken care of.
  3. After a trial with nocdurna my medications are suddenly all very very sedating. I'm sleeping all night and day. I can't stay awake. I guess I have to break everything down to miniscule pieces. I will call my psych. Has anyone had this happen? It's very odd.
  4. I took for 3 nights. I can't stay awake. Incredible fatigue and sleepiness. I keep calling doctors and not getting response. It feels like my brain is way over sedated and my meds aren't leaving my system. Medication has done something to me. It has something to do with depleting electrolytes and salt.
  5. Does anyone know what these "light chains" mean? I never could understand.
  6. Tested by first hematologist: gamma globulin 0.7 LOW Kappa 154 LOW Lambda 84 LOW I don't know what it means, nobody has explained this. But I've been diagnosed with bone marrow cancer (ET). But there is some connection with the POTS and my immune system. I have a telemed appointment this week with a world renowned mpn expert, thanks for reminding me, I will ask her about this! My IgG is low too. We have like the opposite but still hyper POTS and I have terrible IC / embedded UTI, OCD, and chronic cancer. We need to solve this guys, my quality of life sucks. I feel drugged all the time now too b/c the docs just put me on crap downers to sleep and ALL stimulants, including caffeine make me sleepy and I fall asleep.
  7. So my ridiculous cardiologist won't do saline iv's. I need need rapaflo even though it can lower blood pressure. My bladder is HORRIFIC and it's the only med to help so she prescribed northera. I don't know if that's a good combo or what. If my bladder weren't so bad I could drink more. I was about to pass out the other day in Target and I got a gatorade which is a big NO BURNS LIKE ACID IN MY BLADDER drink, but it helped a lot. I drink a lot of water with the salt tablets but that isn't cutting it. Bystolic is the only thing I'm on at the moment.
  8. Hello all. I have not been doing well. I'm on way too many medications and I just rested for 3 hours unable to nap, and I feel like a complete sedated zombie. I'm hoping to also find someone at San Antonio UT who can help with my medications, I need to start all over. I have an appointment with Dr. Scherber next week! I will have to mention the hyper POTS diagnosis.
  9. What I have is considered an MPN. Which are bone marrow cancers or also called blood cancers all chronic. I have essential thrombocythemia, my platelets are too high, they're clustered, they're big, my marrow is making too much of all the rbc and wbc and plt. So you can research MPN if you want but I have no heard of what you typed out. And yes 3 times jak2 positive. I've decided to go see a special doctor in texas who actually cares about patients' quality of life, who specializes in mpn's. This cancer makes me very sick, very debilitated, I don't have pv or mf so they say "your platelets aren't high enough for hu" but dear god do something.
  10. Hi all I do have hyper POTS and IC and I was diagnosed with ME but I think we've found the root cause of fatigue. My platelets have been high since 2005 around when I was a teenager and got sick but not alarmingly so it was ignored. Finally my NP sends me to hematologist/oncologist. I was just at Moffitt Cancer Center after getting bone marrow biopsy (without sedation). I am Jak2 positive, essential thrombocythemia, which is a type of chronic bone marrow cancer. I was going to give up because I described my symptoms and the doctor told me: aspirin, yoga, and exercise. Walking through the lonely corridors of that place, being told to do yoga when I'm completely debilitated, and noticing I'm the youngest one (34) was and is very difficult. Good news is there are MPN specialists that focus on quality of life, I will be calling tomorrow to see if I can see one of these doctors at UT. So I haven't been on here in awhile, sorry, dealing with this stuff plus my grandfather is battling throat cancer and my mom is a nurse during this covid time.
  11. I know a pregnant lady taking her little 3 year old and husband who is sick to Sea World. She wrote out a paper declaring that God will keep them well. As a christian, I find this ludicrous. I mean if you want the virus the best place to go is probably Sea World. I don't know what to say to her without sounding mean.
  12. The local cardiologist is not accepting me. And today I got diagnosed with iron deficiency anemia which has only showed up on basic labs as high platelets. Finally someone realized they've been high since 2005 and sent me to a good hematologist. I'm just frustrated, it's pieces of a huge puzzle and I don't think this will get solved. Nothing can be for ME/cfs unfortunately, but something can be done about the IC which we're looking into embedded infections, and something can be done about anemia, but I STILL CAN'T FIND AUTONOMIA SPECIALIST. I live in Tallahassee and can't go on long trips I've gotten so fatigued. Is there anyone in Jacksonville? Southern Georgia? I also need an mri of my back to check if my spine is affecting bladder. I need someone who can read a PET brain scan and nobody at Shands could. Signing off, incredibly tired.
  13. Yes benzos help me a lot, mostly with ME/CFS post exertional malaise. Fatigue and brain fog. I don't know about the hyper pots.
  14. I had to get a lawyer. They don't charge you, just take part of the backpay. I never saw a doctor but I had to go in front of a judge and explain everything to someone who knew nothing medical. At the time I was battling autoimmune encephalitis, hyper pots, interstitial cystitis, and I have ME/CFS. They just sent me a letter recently to see if I've improved and truth is, I can hardly leave my bed. So we'll see what they say. They are very mis informed about chronic illnesses. Best of luck appealing.
  15. Well my last cardiologist refused to do iv infusions and it has helped my friend so much. Do you meet people with IC as well? I can't drink much, I just can't. Because of ME I have to rest a lot and the IC already makes me go to the bathroom a lot, I drink as much as I can, usually salty water with the salt tabs.
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