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About kkrylee

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  1. My daughter and son both have POTS as well as many other issues. Both started with puberty and daughter's improved dramatically at age 25 (my son is 15 now). I have always had a theory that may sound crazy but the theory involves the hypothalamus and the enlarged pituitary gland. With puberty, the pituitary gland generally becomes larger and may be larger until age around the mid 20's. My daughter's pituitary was always "large and globular" on MRI's throughout her teens. My theory is that the enlargement of the pituitary takes up more space in the brain which could put pressure on the hypoth
  2. Yes, she does get the butterfly rash and rash on upper chest with just a few minutes in the sun. But she is not on Beta Blockers. Only Mestinon which is different than Beta Blockers. The odd thing is that she NEVER got sunburned before her illness began 5 yrs ago and her skin tone was olive which became very dark in the summer with no sunburning. Since her illness she has extrremely pale skin (almost gray at times) and does not get sunburnt but does get the facial rash (butterfly fashion) and the chest rash and the severe autonomic symptoms with sun exposure. She also has difficulty withhe
  3. 18 yr old with POTS and Autonomic Neuropathy has every symptom listed for Dysautonomia PLUS: she not only has heat intolerance but has very strong symptoms from sun exposure. After only 5 mins in the sun, she develops a vibrant rash on face and upper chest and for the next day has extreme disabling autonomic symptoms. I know that Porphyria and Lupus can cause this type of reaction but she has repeatedly been tested for both of these and test are negative. Is this a autonomic problem or something else? Anyone else have this experience?
  4. My daughter started with symptoms at 13 yrs, at 16 symptoms became severe. Now 18 and diagnoses with POTS and Autonomic Neuropathy 1 yr ago. My question is that all research shows that Autonomic Neuropathy is a symptom of another illness, mainly Diabetes or Auto-Immune or Tumor such as Pheochromotoma. But what if all of those have been ruled out? She has been tested several times for Diabetes with Negative results. She was tested for Pheochromotoma and Mastocytosis, both Negative results. ANA has been done 3 times, Negative. Other testing for autoimmune has been done, also negative. Lik
  5. She has had some issues since an infant: Her face becoming really flushed, purple in color, when sucking a bottle and fevers that would pop up, 102 degrees, last a few hours and disappear without any sign of illness or infection. The doctor called them "unknown fevers". Then in 3rd grade, she started with heart palpitations and pulse racing (this was maybe 8 x's per year lasting approx. an hour). Heart monitor never recorded a problem. Then at 13, she started getting faint and losing her vision 15 -20 x's per day every day lasting 30 secs to a minute (pre-syncopy). About 8 mos before the v
  6. She has only been on the fish oil (Omega 3 fish oil 500 mg) for a short time but no change good or bad yet. I and one other Neuro think that it is auto immune because my family and husband's family is riddled with various autoimmine illnesses. But the tests that have been run, more than once, including spinal tap do not show autoimmune so the doctors say that it is not. She had the Valsalva test which was normal and the QSART nerve conduction study which showed the autonomic neuropathy at UT Southwestern Autonomic Clinic in Dallas. These tests were only done once, a few months ago, so I don
  7. I really appreciate your response. Thankfully, we have a GP who believes in testing and does not give up easily. I am surprised that her ins has allowed as much as he has done. That being said, he tested loads of mineral, vitamin, and hormone deficiencies. Her iron levels were actually on the high side (I particularly noted this because our family has hemochromotosis which is a disease caused by too high levels of iron). He even tested unusual and rare issues, such as Porphyria. One of her Neuro's said that unless we can get her well, she won't be able to make med school. But she has ign
  8. I am so frustrated as so many are. My daughter started with symptoms of POTS when she wsa 13 (5 yrs ago). She finally received a dianosis of POTS and Autonomic Neuropathy a few months ago. Meds on: Mestinon (has almost stopped the 20 x's a day total vision loss but nothing else improved), Robinul for nausea (most of the time works for the constant nausea but not for the diarrhea), 1/2 baby aisprin daily, Fish oil capsules. She has been tested for EVERYTHING! Some more than once (MRI's, MRA's, Spinal tap, more blood work that I can relate, numerous heart tests, etc.. Does not have: diabet
  9. My daughter was 13 when the severe symptoms started. It took 5 years and lots of research on my part to finally get her to an Autonomic clinic 8 hrs away to get the Dysautonomia and Autonomic Neuropathy diagnosis. We still do not know the cause of the Dysautomia and Autonomia Neuropathy. The approx. 15 different specialists that were within a 80 mile radius could not diagnose her. These areas included teaching hospitals and children's hospitals. We are 30 miles north of New Orleans. A couple of Neurologists guessed at Dysautonomia but said they did not know enough about it to test or tre
  10. When her symptoms are put it, the first possibilities are MS, Lupus, Chiari Malformation. The doctors ruled out MS because she has no brain lesions. Some doctors think that it is autoimmune, due to heavy family history with autoimmune disease, but her ANA was negative so they say cannot be autoimmune. AS far as lupus, they say no, but I think that is still a possibilty. As far as Chiari, one Chiari specialist thinks that it could be borderline Chiari (however he only viewed her MRI's, did not see her in person). She also has an enlarged globular shaped pituitary gland but there is no sign
  11. All of my daughter's symptoms began at age 13 with vision blackouts. Then at 16, she had an episode with temporary peripheral vision loss, dilated pupils that would not constrict, and a headache pressure at the base of her skull. It has now been 16 mos since that episode and the headache pressure has never left her. It is 24/7. She has other headaches more like migraines that come and go in addition to this headache pressure that is constant. Unfortunately, we have no answers. She is still not definitively diagnosed, but it is assumed that she has an autonomic dysfunction. No one in our
  12. My daughter has the 1 sided flushing also. It happened once when she was getting a blood patch after a spinal tap and the Dr. pointed out that he could draw a line down the center of her face, with one side bright red and the other side normal. He was the one doing the spinal so he did not know why it was happening but he was fascinated by it. It has happened to her numerous times. I researched and found that this is called Harlequin Syndrome. She has not been officially diagnosed yet, but the general concensus of her doctors is that she has an autonomic disorder with mitral valve prolaps
  13. My daughter's problems started at 13 with vision blackouts. The 1st one lasted 10 mins. Since then 15-20 x's a day she has a total loss of vision for 30 seconds. She does have mitral valve prolapse & orthostatic hypotension. Her vision problems are worsening weekly, she is now 17, with frequent loss of peripheral vision for as much as 30 mins at a time, frequent spots or lights in vision, and the total vision loss is still 15-20 x's a day but the episodes are lasting longer. The opthamologist said that she has no eye probems except for being near sighted. She wears glasses for that
  14. Thank you Anna for that information. I tried to find the post that you were referring to but I could not find it. I did research Pheochomocytoma and everything that I found states that patient will definitely have hypertension. My daughter has hypotension. She never gets hypertension. But I definitely appreciate your input. I know that her diagnosis will come from someone who can lead us in the right direction. So I do want every lead that I can follow up on.
  15. Thank you Melissa, I am very grateful for the internet. The doctors give no info at all. If blood is not seen shooting out of a vein or a bone is sticking out of your leg, you must be depressed. One doctor at Children's hospital, after hearing that one of her symptoms was constant nausea, immediately decided that she was a teen so she must be pregnant. If that had been the case, I would be a grandmother, because it has been 9 months since these symptoms became severe. This 17 yr old has not had a real date yet or a boyfriend. Without others to share with, it would really be frightening.
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