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Everything posted by Noreen

  1. Glad you found us but, of course, am sorry for the necessity to do so. It is great that you got dx so quickly but it is rotten that none of the standard meds are giving you even a bit of relief. I remember reading a member story where the gentlemen also attributed his dysautonomia to bariatric surgery. If you go to DINET main page and look down the left column you will see a link to member stories. Just thought it might br small comfort to know you are not alone I have nothing to offer re: nystagmus. I would encourage you to check it out with your PCP and see a neuro if he/she recommends.
  2. Linda Congratulations on becoming a grandma! Wonderful news - enjoy the love Regarding the mottling - does it look like the images here ? If it is looking like the livedico reticularis photos you should consider getting tested for antiphosolipid syndrome. That along with cognitive impairment is what had my rheumy checking for APS initially.
  3. Do you put it on anything or do you eat it off a spoon? How much? I am all for trying anything that will help with energy levels.
  4. Do you have a temperature range or humidity level where you don't venture out even after you have acclimated? The weather changes rapidly here. While I try not to stay in AC all the time as the sudden shock of heat as you go from house to car to doc's office can be worse, I don't really think fully acclimating is possible in August.
  5. San Luis Obispo was featured as the happiest place in America on Oprah the other day. I bet weather like that plays into it. It sounds divine. We are getting a foot and a half of snow tomorrow on top of today's 6 inches. For cold, I swear by merino wool cardigans. You don't get overly warm in them as they breathe. I also wear merino wool skirts which are great for warmth yet have no bulk - super simple to care for. Heat and humidity is the bane of my existence - actually when it is hot and humid I am less than human.
  6. Dani- We will all be pulling for you. So many of us have seen docs who did not know the extent of what we go through, I'd suggest keeping a journal of your daily activities during this period leading up to your appt. If you remember Simmy videotaped a bad episode and that made all the difference in his application.
  7. Hi Jana- My sympathies. I have had vulvodynia attributed to lichen sclerosis for 5 years. I wish I had something for which there was a cure rather than treatment. It was excrutiating at points. When I came to out in the ICU after spinal fusion therapy I was writhing from the pain - apparently the doc had been wrong about the nerves not being affected prior to surgery and when everything was put back in place the nerves came back full force. Fortunately the nurses knew enough to get me an ice pack. I don't wear compression garments due to this as air circulation is crucial. I tend to wear skirts most of the time. the treatment is strong steroid cream which must be applied weekly after the initial /acute problem is under control. From a support group I learned that many have problems if they use Always sanitary pads. If you use them toss them -it definitely helped. best of luck, noreen
  8. Check out this .I have no idea what she is saying but it is impossible not to laugh.
  9. I was re-reading the old newsletters and came across this question and response in the Fall 2009 issue: stacyrn: If a person has POTS for years, does the tachycardia shorten your lifespan? I am an RN trying to cope with 12 hour shifts and POTS. Am I making the POTS worse by pushing myself so hard? speaker: Dr. Fredrick Jaeger: Since our understanding of the importance of dysautonomia such as POTS is relatively recent, there are no long term studies on survival. However - as I indicated in a previous question there is a high incidence of normalization of heart rate or resolution. My suspicion is that there is probably no reduction in survival assuming that the rest of the cardiovascular system and structure is normal. Frequently patients need to accommodate their work schedule around their symptoms.
  10. The ones on my arm were actually witnessed by doc. I think warm epsom salt foot bath is in order. The magnesium should be helpful. I have had occasion where they've gotten out of control and not allowed me to sleep and I use a muscle relaxant to try and tame them a bit. Knock on wood it has been a while.
  11. Wonderful story and beautiful picture. Celebrate!
  12. All you can do is be truthful. Try not to overly stress prior to the hearing. Wishing you the best of luck noreen
  13. Now that takes the cake. Perhaps your toes want you to become a dancer or maybe merge the two in your new profession - 'The Ballerina Chef.' I have had fascilations in varying degrees in many parts of my body - it can be fascinating to watch if it is someplace like your arm. You almost wonder, though, if the cat will attack as it is that kind of movement under the surface like when you move a finger slowly under a blanket for their amusement/exercise. Generally I think they are painless but if it is minor that pain would get swallowed up in background pain noise. You might want to check out this blog description of pain charts in order to give a good description to your MD Hope your twinkling toes settle down and allow you to sleep. Watch out for bears. noreen
  14. There are so many things that affect this it is crazy making! I wanted to mention keeping an eye on weather changes and noting if that impacts how you feel. Barometer changes are horrific for me. It is difficult to keep exercising but getting deconditioned is worse. Hope this flare passes quickly, noreen
  15. I got inconsistent and wonky results using previous heart rate monitor. I am currently using this watch/monitor and having very accurate readings. It may differ by 2 or 3 points from my blood pressure monitor or the heart rate readings on gym equipment but that is most likely due to having to move arm to push buttons to get reading. it is an attractive watch and is a useful tool in trying to get a handle on this condition.
  16. It was the historical perspective I was going for Julie. I agree it could be updated. Having fibro since 1990 I am used to docs blaming everything on nerves.
  17. Julie- Wonderful news that it is helping. Keep us informed as to how it is working past week two. I was on Enbrel (1st anti-TNF med) for 7 years. It is incredible for fatigue and really stopped bone damage from RA. However, I don't think it should be taken for just anything and tend to believe it is over prescribed. I took it from the time it was approved until I ended up with vision problems and head pain. Plaquenil has been around for a very long time and would be a good choice for you. I take it for RA, possible SLE, and suspected APS - it works for and is prescribed for all those conditions. It takes several months to get full benefit in your system and you have to have visual field tests done. It generally is a very safe drug
  18. I think you might find this article on dysautonomia interesting. The cardiologist author maintains that it is a new name for an old problem previously called neurasthenia.
  19. Prayers and positive energy for strength and successful outcome for your hubby.
  20. Wish things were going better but glad to hear from you. noreen
  21. I get visual snow but not from looking at a light background. I also have floaters, etc. the snow seems to show up more when autonomic symptoms are prominent. I have tended to attribute them to migraines. I have reported them to docs but haven't gotten any answers.
  22. Thanks for the links, Julie. I hope my eyes and migraines will cooperate and allow me to check them out. Of course then I will have to pray that my memory holds - lol. So tough to read an article and then not have a clue what it says. I have livedico reticularis see picturewhich was my rheumy's first clue along with fatigue and cognitive complaints - my migraine history goes back to adolescence. I have miscarriages in my hx and clotting shortly after childbirth with my first son. My labs have run continually at brderline concern for several years. I am sorry I can't remember which lab the rheumy runs but no one is keeping track of INR currently. I was sent to a hematologist who said - "well you are an autoimmune mess"(he got me laughing hysterically with this honest comment) so he decided aspirin would be a better trtmt than coumadin currently. I think I have had microembolism in my thigh and possible TIAs but without doc confirmation. APS is a tough diagnosis to get because one of the criteria is having a stroke - I would rather not, thanks and am doing what I can to avoid one.
  23. Hugs firewatcher - I hope you are in good hands with this doc and there is no progression. Why do you think sticky blood played a role in this? I am on plaquenil, aspirin and fish oil for 'suspected APS' as my labs have been abnormal for years.
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