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Everything posted by Noreen

  1. ana- thanks very much for the reply. Your explanation of the test was great. Hope you have a good day.
  2. Thanks for the reply, Corina. I, too, have an Omron bp/hr machine. It works well enough, I guess. I get a lot of error messages due to rapidly fluctuating rates. I have never caught an extremely low rate on the Omron - I think just moving to get it makes my heart go into low 60s. I use a Sportline analog watch/HR monitor. I started using that because I couldn't handle the strap all the time with other HR monitor due to the heat in the summer. Also I can sleep in the watch and do a quick check of HR without pulling out the BP machine right before getting out of bed and then upon standing. The 50 rate after waiting a few minutes happens rarely in the night - it just won't register below that. It has registered for me 50 to 145. Whenever I take my BP it matches the Omron and matches within 2 or 3 beats the equipment at my new Y. I guess I'll accept the limitations especially as I am now going through a period where my heart races in the middle of the night and I will get readings of 110. Can't stand this stuff.
  3. The lowest my monitor will read is 50. What types/brands of monitors read in the 40s?
  4. After you started to feel a wee bit better, you began doing 'normal people' things. Avoid those things and you'll be fine. ((hugs)) noreen
  5. You might want to have your back checked out. Many back docs look at dermatones which show connection between spinal nerve root and an area of the skin supplied. It sounds to me, from your description, like there is something going on with L5. You can check the dermatone chart map here. or wikipedia. A description of myotomes and dermatones can be found here. Hope things settle down and you get the answers you are seeking.
  6. You don't say whether you were standing in the shower trying to shave your legs. This would put you in a bend over position in a warm environment - two things which we are told to minimize. I think that as EDsers age some of these things are harder to ignore. You are on track with how I went. Your theory on the midodrine is good. It is tough for me to comment as I have always pushed too hard and not done myself any favors by doing so. Hope things settle down for you, noreen
  7. Hi Sara- Did you always clot fast or has there been a change as you aged? I, too, have EDS and clotting issues. noreen
  8. Who did the caloric test? I have not heard of it and appreciate what you can do to educate me.
  9. hey there- I can so relate. You can hang out in lupus limbo for decades. It is beyond frustrating. All you can do is keep checking in with your rheumy. My meds treat for lupus and APS but the definitive dx the doc uses is RA. So sorry, noreen
  10. (((willow))) Keep up the good fight. Hope you are able to joust successfully with Sir Lancelot.
  11. A truckload of zero gravity chairs modified with electric scooters so we can get around yet rest at will. Those margaritas sound great. EDIT: forgot to add epsom salt footbaths.
  12. I agree with you about the gallbladder. I had mine out 7 months prior to coming down with fibro in 1990. The diagnostic list just grew from that point on.
  13. Apache- That is very interesting. Could you point me to some journal articles on the subject? As a matter of curiosity, who dx'd your dysautonomia? tks, noreen
  14. Have you always bruised easily? New symptoms should definitely be brought to your doc's attention. If you are not getting enough exercise you can be subject to several issues. Pain in the leg is a symptom of deep vein thrombosis. Get it checked out and relieve your anxiety.
  15. I know you are glad to have your official dxs. I used to describe the TTT as a medieval torture device. I think it is the only med test I could not do again. Glad yours if over.
  16. Mary- Do you take drug to function? Drug addicts function to take drugs as opposed to taking drug to function.
  17. That is fascinating Dianne. Please let us know how your appointment goes.
  18. Hi- For this diagnosis I would strongly suggest you get a second opinion. There are members who have been misdiagnosed with diseases such as Parkinson's. While I know there are members here with MSA, I would encourage you to check wemove.org for info - there is a forum there on it. wishing you the best, noreen
  19. So sorry you got the flu. Glad that you are on the mend and hope recovery is quick and complete
  20. Thanks for letting us know. I hope you get some relief with the generic. Let uS know how it goes.
  21. Thanks for posting the links. I found this quote to be almost laughable, however, as I have lost faith in the FDA. " raising obvious concerns that the drug will not fare well under a stringent review by U.S. drug regulators."
  22. Thanks for all you do Nina. Hope the dissertation is coming along. (hugs)) noreen
  23. I use to love treating a cold with a hot toddy. Shot of Jameson over a slice of lemon with four cloves covered with a spoonful of brown sugar - fill the mug with hot water. Maybe you might want to try the cloves. I can't do it any more due to mtx.
  24. Sarah- I only know that livedico reticulari occurs in EDS. I've had it forever but it is much more pronounced than it used to be. I am not aware of a correlation between EDS and APS. APS is found with lupus.
  25. Hi Lindajoy- While I have EDS, apparently the livedico reticularis became more pronounced and that had the rheumy checking. Several years ago the criteria use to be having a stroke as part of the criteria. It has now been modified to include any thrombotic event. I have been on plaquenil and aspirin for a number of years. My numbers have stayed consistent so I haven't had to go on blood thinners. For more information, you could check here at the APS foundation. best of luck in finding answers, noreen
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