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Psalm 23

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  1. Thank you Raisin. It can unfortunately be a long road trying to get answers and help. It really is all about seeking out the experts in the field. It wasn't until I finally realized who I needed to see that many of the pieces began to fall into place. Except for this odd antibody that turned up I have finally been given diagnoses that make sense and medications that help. I hope you make progress on your journey. I'm so sorry about your abdominal pain. That definitely needs follow up. Yes. God bless us all. Janet
  2. Hi Raisin, I'm sorry you are having to deal with this antibody issue as well. I tested positive for the calcium channel n-type antibody this past spring. I had previously tested negative so it came as a complete surprise to my Neuro and myself. Because of the cancer connection as was pointed out by Natops at the very least you should be retested at a later date. I was advised to have a CT of the chest, abdomen and pelvis as well as a mammogram and gyn exam. I am also scheduled for a repeat paraneoplastic panal next month. I was told by my hematologist/oncologist that if there was no cancer det
  3. Sadly yes the abdominal binder does bunch a bit around the waist. I guess I have gotten used to it though so the bunching doesn't really bother me. I think the amount of bunching depends upon whether you are short or long waisted.
  4. I order my compression hose from Discount surgical.com. I wear thigh high and the compression strength that was recommended to me by Mayo Neuro was 20-30mmHg. What I notice when I wear the hose and abdominal binder is that I am able to remain upright for longer periods of time before getting symptomatic. Janet
  5. I have a fluttery sound that occurs in both ears when I have been standing for too long. It disappears when I sit or lay down. It seems to be more problematic on worse dysautonomia days. Other than getting off my feet I haven't found anything else that helps me. My mother has a problem with episodes of ringing/buzzing in her ears. I took her to an allergist and he suggested it was allergy related and recommended she take an antihistamine as needed which seems to have helped her. I hope you find some relief. Janet
  6. Alex I have never heard of taking Agmatine for help with neuropathic pain. I'm going to check that one out. Thank you Dave and Alex for the links and info. Janet
  7. Issie I hadn't heard before that some find a worsening of their POTS symptoms with turmeric. Do you know where Dr. G. stands on turmeric ? I never asked him. It was recommended to me by my Rheumatologist and one of the Mayo docs in consultative medicine who I'm sure didn't know much about POTS. Dave I have found quite recently that a gluten free diet has been helpful for my GI symptoms as well as general pain reduction. I guess in the end it really is trial and error with everything. Janet
  8. I started taking Alpha Lipoic Acid 600mg daily about 3 months ago and began to notice a significant reduction in pain after about week 5. ALA can actually be taken up to 600mg twice daily but as much as I would like even greater pain reduction if that is at all possible I'm fearful of a potential vasodilation side effect. Issie had posted that as a potential side effect a while back so I have been watchful of it. Thank you issie. Other dietary supplements I take; Tumeric 1,160mg ( Mayo recommended it but emphasized it had to contain black pepper ) Omega-3 & DHA 2,126mg Vitamin C 1000mg V
  9. Yes. Is definitely the case for me as well. Allow plenty of time for recovery. I was also told by my Neurologists nurse that it's not uncommon for there to be a several week or longer recovery time involved for pots symptoms to settle down post viral infection. Take care. I hope you feel better soon. Janet
  10. Wow. That's awesome. I'm so happy for you. I decided to go gluten free several weeks ago and have felt better for it. I have been juicing a fruit and vegetable mixture for while but it doesn't have cabbage in it. I will have to try adding that as well. Thanks for the information and encouragement. Janet
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