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Psalm 23

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About Psalm 23

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    Advanced Member
  • Birthday 07/06/1959

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    Interests/Activities I am still able to engage in: Bible Study, Spending time with family and friends, Playing the piano, Reading, Light gardening, Scrabble, Bird watching, Attending concerts, Picnics, Short walks. Activities I am hoping to return to: Snow skiing, Tennis, Long Walks, Horseback riding( I used to jump ), Bicycling, Serious Gardening, Nursing(Labor and Delivery), Volunteering.

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  1. Hi Katie. I'm so glad you used a wheelchair as well and had a fun Universal outing with it. I'll admit getting over the mental aspect of it is difficult but once you realize how much more fun some outings can be makes it easier to accept. I was just talking with a friend earlier about the benefits of motorized scooters. I'm actually considering getting an electric wheel put on my bicycle. I took my mother on a senior event the other day and way overestimated my capabilities. It was a huge reality check.
  2. After fighting with my pride I broke down and used a wheelchair for the first time when I went to Disneyland with my family last spring. As much as I wanted to deny it there was really no way I could have gotten by without one. It was the best decision ever in spite of feeling very self conscious about it. Unfortunately one just has to suck it up sometimes to make for a more tolerable and more enjoyable I might add situation.
  3. 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
  4. 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
  5. I have been diagnosed with both autonomic and small sensory fiber neuropathy. These diagnoses resulted from abnormal autonomic reflex screen, qsart, skin punch biopsies, symptoms and neuro exam. I have found taking Alpha Lipoic Acid to be of some benefit in relieving pain. Janet
  6. 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.
  7. 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
  8. 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
  9. No I would definitely taper down the Clonidine if I were inclined in that direction. It has been so helpful though in reducing jitteriness/tremor I can't imagine life without it. I'm hoping for a shot at trying Florinef in the not too distant future now that my pressure is tending toward lower numbers. Janet
  10. Hi Rich, Thank you so much for the Ivabradine information. At present between the Mestinon and Clonidine my heart rate is about as low as it should go so I shouldn't need to resort to another beta blocker. If that changes I will keep the Ivabradine in mind. Thanks again. Janet
  11. I have an ongoing worsening problem with shortness of breath. I was tried on labetalol as an add on to my other medications to try and better address my labile blood pressure. It caused a significant increase in my shortness of breath problem as well as an increase in chest pain so I was tried on propranalol instead which resulted in the same response. The dosage was very small. No more beta blockers for me. Janet
  12. 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
  13. 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
  14. Hi Jeff, Thank you so much for bringing more of an awareness of dysautonomia to the general public and for sharing your story. What a tragic time in your life to help spread the word about a little known disorder. I'm so sorry for the loss of your sister Brittany. She did seem like a very sweet person. Faith, family and friends is what gets me through this very challenging disorder. Janet
  15. 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
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