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About CallieAndToby22

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  1. So I took jakafi and it annihilated my immune system. I was taken off of it b/c my white blood cells were too low. Ever since taking this MPN cancer drug, my dysautonomia and bladder are HORRIFIC. What do we know about the immune system and dysautonomia? What am I supposed to do? IVIG did cure my dysautonomia in the past but I only got it for 6 months.
  2. Now they're saying 6 months for Vanderbilt. I can't do it. I'm basically bed bound. For some reason I have absolutely no mental energy and I can't stay awake or do anything involving my brain.
  3. And yes I was mis diagnosed. I actually have a very rare form of chronic blood cancer that only 200,000 people in the US have. I think ME is over diagnosed and there isn't enough investigation into what could really be going on. I have Essential Thrombocythemia jak2 positive.
  4. They've been drugging me with antidepressants and antipsychotics since I started complaining about my symptoms at age 17. ME is not treated with those meds. And on the contrary, as someone mis-diagnosed with ME, I think the majority of us are dealing with very severe and symptomatic forms of dysautonomia. Amitryiptyline can be used for Interstitial Cystitis and pain but causes terrible weight gain and it a downer for sure sedating. I don't know what valdoxin is. My cancer doctor told me I was on so many psych meds that it was like wearing 50 blankets so I weaned myself off most including the d
  5. I have not. But I've been misdiagnosed with POTS and hyper POTS so I am quite worried as to what is going on. I just read your link, no I don't have that, my blood pressure actually drops very very low and I get dizzy and sick and faint or have seizures.
  6. Dr. Thompson is officially retired. He's trained some new guy who is a family medicine doctor. If you want to know more about Dr. Brannon, pm me. That's a good idea. Thank you.
  7. Yes I've been having movements since before I was even diagnosed. I even took video of it several times but doctors were not interested. Recently a few seizures. I'm not sure what to tell you b/c I don't know what causes it but I can feel it coming on. I take a Benzo at night and very helpful for symptoms, sleep, and revving nervous system. They did put me on a beta blocker 2 months ago and everything has gone down hill, but I quit it a few days ago, I think it had something to do with the seizures b/c my blood pressure is already so low. Mine is definitely jerking movements also, gets painful
  8. So they've received everything at Vanderbilt but said it would be 4 months before an appt. I really can't wait that long, especially the shape I'm in, it's affecting everybody, and I'm miserable. I do need some sort of accurate diagnosis. I live in North Florida so Georgia is even doable. I know Dr. Rowe personally but he's a pediatric otherwise I'd see him at John Hopkins.
  9. I'm sorry. Yes my bf right now wants children and I'm like, can't give that to you right now.
  10. Well I'm too tired to read or do my music, but I take photos when I can then I spend time editing on my computer and adding to groups and Flickr and instagram. Also, I've been watching reaction videos to music and it's quite entertaining. Listening to music as well. I would suggest something creative. That's been the most therapeutic for me.
  11. So this is what I posted on Facebook and got no responses: "Hello everyone. I'm in a bad situation and I don't know that Hyper POTS is the correct diagnosis (I have had a tilt table test). When this all started in 2008, I started running on adrenaline 24/7 for an entire year then I crashed and spent the next year bed bound and the next decade stuck at home. I had a chance to do IVIG for something else and that really solved the dysautonomia problem. But now it's back and I think being diagnosed with Essential Thrombocythemia, which is blood cancer, my platelets are too high, and the medi
  12. Thank you for the information and the response. I did google autonomic seizures last night but I was out of it, I'm out of it now. I have H POTS too. I have to go to the bathroom a lot b/c of IC and it completely wipes me out. If I stay here in Tallahassee, I'm going to die, or continue to have no quality of life. I've been sick since I was 17 and at 18 I woke up definitively sick. I have no energy and my birthday is Saturday. I'll eat some cake I guess. Doctors have never listened to me, especially male doctors, I told them I was sick, they sent me to psychiatrists and I'm just now getting o
  13. Guys I've posted that I really need help with my dysautonomia. I don't know what to do any more b/c Vanderbilt still hasn't received a referral from my doctor. Yesterday I got a nap and I felt good. Then I came home and walked around some, then sat in the recliner. I was completely relaxed and felt severely ill. So I laid down. I knew something was wrong, I managed to text my mom and she and my aunt came home. They witnessed me gasping for air thinking I was having a panic attack, but I had a seizure. The thing is I think it has to do with the dysautonomia. The ER did NOTHING. But
  14. I'm so tired, sleeping all the time, I get up and feel hot and sick. I really need help. I started taking my beta blocker again and it has helped.
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