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dsdmom

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Everything posted by dsdmom

  1. Trainboysmomrocks, What type of adrenal support are you using?
  2. I am SO glad that Rene found out what is wrong and is getting treatment. Hope to hear from her soon on here. Hang in there Rene!
  3. Glad you are starting out small. How are you cutting it into such small fractions? Or are you using the liquid? I use the liquid version. How long does the medicine stay in your body? It has a very short half life. I take it every 4 hours. (3x day) so if you don't react well it shouldn't be around too long. If I try it today, do the side effects go away by the next day? I think so - but be prepared you might have increased bowel movements at first. You also may not. Can you stop it at anytime? Yes. I also stopped at 20mg...so I only take 20mg 3/day.
  4. Congratulations!!!!! As far as stool softeners go, I'm with Rachel - I prefer Miralax. Very gentle on my system and does the job. Dulcolax has me so crampy and regular stool softeners don't do anything.
  5. Ericka Someone just mentioned something that I meant to as well - have they tested you for myasthenia gravis?
  6. Nina, Good to hear from you. Glad you are home - wishing you a speedy recovery!!!!
  7. Erika I'm so glad you have been moved but it sounds like you still need someone advocating for you. It is so hard to do it yourself when you are the patient. Can you request to see a patient advocate and see if they will help? And do you have a pcp or no? I'm guessign no since not many of us have good ones....but if you do, can they get involved? I wish I were down there so that I could help out. You are in my thoughts....keep us updated.
  8. Dani I just want to say good luck!!! Whatever happens, you will get through it and your new bundle of joy will be here before you know it.
  9. Teri, Thanks for taking the time to let us know. I am sending healing thoughts Nina's way.
  10. Erika, I'm keeping you in my thoughts. I'm so sorry you are going through all of this. I hope you can get transferred to another hospital and insist on talking to someone who has knowledge of pandysautonomia. Hang in there.
  11. If you haven't tried lactulose, I think that might be a good possibility. I had to take it while I was pregnant. If i remember correctly it is really just a sugar. You may do ok with that. Also - with the erythomycin, were you on a high/normal dose? I believe small doses can be used to stimulate the GI tract and maybe you could tolerate that?
  12. I believe I've read somewhere that advil increases blood volume to some extent. Maybe that helps. Here's something else to think about - those who discovered the possible link between XMRV and CFS have suggested that a possible treatment option right now could be NSAIDS. I don't remember the rationale behind it might be something to think about....
  13. I find it interesting that your doc is ready to do this. Not saying he's wrong - just that it's interesting! I've had a biopsy and other tests also show small fiber neuropathy but I've been to 2 autonomic specialists and neither is really on board with ivig. I think they feel the same way about plasmapheresis. Of course if something helps, I want to do it! So if you do have luck with it, it may be something I push for further discussion on. Good luck!
  14. Mary P, if you reread my message, I am not giving Poppet a prognosis at all. I know nothing about her other than she thinks she may have lupus. My only advice is to see a doc about it and hopefully to get treated quickly IF that is what she has. Again, I did not do it to scare her and I apologize if she was scared but I am not diagnosing or giving a prognosis. Just giving a tale of experience. Poppet - glad you are seeing the doc next week - hopefully he/she can figure out what exactly is going on and get you on the right path.
  15. Lupus certainly can be life threatening. I hope they figure this out and get you on treatment asap. I have a friend who has lupus and even though they caught it and treated her it had affected her kidneys before they were able to start treatment. She had decreased function of the kidneys for years and then one day last year they just completely failed. She had to go on dialysis and eventually was able to get a kidney transplant. I do not want to scare you, it's just that if you do have lupus it is indeed very serious and you need to be treated quickly. When do you see the doctor again?
  16. This isn't surprising at all - your sympathetic nervous system doesn't know how ot turn itself off. I haven't found anything that really helps...just waiting it out and avoiding any triggers. With time it has gotten slightly less. For example, if I am driving and I pass a car, my heart used to start racing and get out of control and I would feel so awful because , as my doctor said, my system doesn't know how to shut off. Now when I pass a car I get a quick blip of feeling awful but then I go back to normal much quicker.
  17. From speaking at length with Skip, lowdosenaltrexone.org isn't a fantastic site in that it has sort of been abandoned. Apparently a lot of the information on there hasn't been updated in a really long time - as far as Dr. Bihari's theory of "The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production." As I type this I am just remembering that I am pretty sure that Skip said that the endorphin theory is what didn't pan out. If anybody does want more info on LDN I recommend calling Skip's Pharmacy in Boca Raton, FL. He can better explain the mechanism behind it. Lenna, I'm sorry, I thought your son had been diagnosed. Does he have post-exertional fatigue/malaise? Good luck with the scan...let us know how it goes.
  18. It is my understanding, and from speaking with Skip @ Skip's pharmacy in Boca, LDN works by switching your immune system's balance from th2 to th1. There's a lot behind that, but I didn't think it had much to do with endorphins at all, unless the endorphins themselves work on modulating the immune system. So as far as using ldn for pots. it's not that it's indicated for that but rather that people have had good results with it for CFS, and many people with CFS also have pots or autonomic issues. So if you just have staight pots it might not do anything to help you. That being said - Lenna, doesn't your son have CFS as well? Interesting that he felt worse on it. Out of curiosity, are you planning on getting your son tested for XMRV if/when the time comes?
  19. I posted something in another thread for you, hopefully you'll see it there. Otherwise, I suggested the autonomic group @ Beth Israel in Boston.
  20. I'm so sorry to hear that the house isn't clear yet! Don't lose hope though - I think healing will take a long time so don't expect anything overnight. Hang in there!
  21. I have seen Dr. Novak several times and gotten my autonomic testing done through him. When I started with him he was great and very accessible and would answer phone calls or emails. Now I can not even get my prescription refilled and I just got another notice in the mail that my next appointment in february has been pushed until may. All of that being said, he does know a lot about dysautonomia and is not a bad doctor, so hopefully this person will have a better experience than I have. I think he has just gotten really busy.
  22. Oh Erika I am so so sorry. I can feel your frustration from here. I have been dealing with the same things for the last year and it is exhausting and so sad that these companies can just cut you off on a whim. I don't know how these people can live with themselves. Anyway my benefits were cut off a year ago without any warning (although they claim they sent me several notices - they did NOT) saying they did not receive info from my doctor. My doctor was pretty pissed as well and called the case manager and reamed him out and sent in the records they needed. They ended up reinstating me so hopefully the same will be true for you. Since that time they decided to cut me off again and I'm now going through a lengthy appeal process and it does seem very unfair that they can do this whenever they want. And I totally understand how hard it is to try to prove you are disabled. And needing the $$$ so badly. I feel like it's never going to end...
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