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About CallieAndToby22

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  1. Yes, good topic. IVIG helped me but it was a 6 month trial for a different diagnosis. IDK how to get it now.
  2. I can't sleep, taking lots of meds and not helping. Also, how do I get blood flow to the brain and retain it?
  3. So lately it's been super hard for me to bathe. I also like to find all natural / organic products..... or at least stuff that can be recycled after use. I found some dry shampoo that you simply put in your brush and comb through the hair; I haven't received it yet but I ordered it. Dry shampoo is something that doesn't take water, it's quick and easy to put in the hair and soaks up oil and makes your hair looked washed and volumized. I found some all natural ingredient brands on a website (I don't do well with all the chemicals). When all the toilet paper ran out in stores, I ende
  4. Hmm. For the past year I've had a female hair stylist dye my hair blue and green. Anyhow, it comes out after a couple of months and did not bother me symptomatically. Now I'm just letting it go brunette although growing up and into college I always had blonde hair. I always wondered why mine got so dark.
  5. This program is great but they aren't getting govn funding and there is at least a 10 month wait and they only select like 10% of applicants. Wish I could get in there! My friend got to go and she was diagnosed with mitochondrial disease. UAB has an autonomic testing lab and they list 15 different types of dysautonomia, though I have not been there.
  6. I would do some research and look at the Cleveland Clinic. I think there are some well known autonomic specialists in Texas but I live in Florida wish I could help more.
  7. Thank you. I actually have terrible bladder problems and I can't drink anything with citric acid or potassium, which is very frustrating. I can't take midrodine because it actually makes it very hard to urinate and that's already an issue (it tightens the bladder). All my health problems are fighting each other and I don't know what to do. My veins are tiny and roll as well, the veins on my hands always blow. I don't have a geneticist in my city and my neurologist did a lot of blood work but that's all. This is very informative thank you. Unfortunately there isn't anyone near m
  8. I started having seizures months ago and the first ER doctor said I was "stressed over the pandemic", the second called them "pseudo seizures", the third knew POTS but didn't understand I have HPOTS and terrible syncope. At one point I went to the ER and starting seizing in the wheelchair and they held me down and told me to be "still" so that they could take my vitals. I always had to ask for saline infusions, which like I mentioned, should be an automatic. The third doctor who knew what POTS was asked the nurse to do the poor man's tilt table, but she was in a hurry and after receiving a ful
  9. Thanks for helping on this forum @pistol. I used to be able to swim 8 months ago (pre cancer medication) and I could do photography and music. But now I can only sit up for a few minutes before I start passing out. I too have the dystonic seizures. I'm frightened that I will never do these things again.
  10. A few things I want to add. I've been wondering if I have EDS. I have no veins! I can't even get saline iv's any more and that's the only thing that remotely helps although most of the fluid retains in my stomach/gut area; florinef makes me extremely ill, it does something to my autonomic nervous system that I can't really explain..... I am just wired and tired from that medication. I am scared to eat or drink as well. The water is going straight through me and I'm tired of water with the salt tablets! I only eat in the morning, slices of cheese, some blueberries, and cucumber sliced with salt
  11. Thank you once again. Did you have to eventually travel there? I did read his pdf on "underlying causes" and was really hoping that would become an investigation for me.
  12. Hello everyone, I'm sure some of y'all have seen me around for quite some time posting...... I have an upcoming telemedicine appt with Beverly Karabin NP. Getting this appt has been very difficult. My neurologist referred me and sent their records and my mom sent a bunch of records. They said they had to have a TTT and luckily I had one done a decade ago but it's not really accurate to my situation now, however, it does show that I don't have POTS as the doctor just labeled it Orthostatic Intolerance. My concern now is that I'm bed bound and it's very difficult to speak. My mom will be h
  13. Sadly, when I had my bone marrow biopsy, they messed up and did not test properly for iron and ferritin so that's still a mystery. My latest labs are abnormal but not really relevant to this thread.
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