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Psalm 23

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Everything posted by Psalm 23

  1. I had severe gastroenteritis back in February. I have never experienced anything like it before. Ended up in the ER for hydration and med for pain and nausea. Its so frustrating the way acute illnesses seem to have a lingering negative effect on POTS symptoms.
  2. I have been on Plaquenil 300mg daily for the past 5 years without any problems. It was prescribed for lupus and has primarily helped me with rashes and joint pain. Like you Issie I tried LDN for 6 months. First at 3 mg then increased to 4.5 mg. My Rheumatologist said a significant number of his patients benefited from it but I didnt notice any difference at all. I was very disappointed
  3. Also, I noticed a post regarding Mayo possibly no longer accepting Medicare so I called them to clarify as this would have affected me and others of you I am sure. I was told that with the exception of Mayo Clinic Family Medicine - Arrowhead, they still accept Medicare.
  4. It took me four months to get an appointment with Dr. Goodman as a new patient. I think one can get in sooner during the warmer less desirable months.
  5. Hi Jangle, In October of 2011 I went to Mayo, Arizona seeking answers and any possible treatment recommendations to improve my level of function. It was by far one of the best decisions I have ever made. My primary objective was to see Dr. Goodman but what typically happens is a referral first to Consultative medicine and then referrals to other physicans as deemed necessary. Prior to my appointments I was mailed the first of what would be many revised itineraries. Based on those I began writting out specific questions I had for each of the different specialists to which I had been referred. My main concern was of course POTS, which I had already been diagnosed with and the possibility of autonomic neuropathy. Like you I look for any new research out there on the subject and am so grateful to everyone on this forum who provides new information and links. In any event having your questions somewhat formulated and a potential medication list prepared as you have done is especially helpful. I always felt like I was given a sufficient amout of time in each appointment to address any questions or concerns. In the end I had an individualized plan for conservative and nonconservative treatment of my POTS as well as recommendations for other health issues. Mestinon is one of the medications I am on by the way. Additionally, I have been amazed and so thankful for the long distance telephone support that has been provided. I should think that your experience at Mayo, Rochester would be similar. Best of wishes to you, Janet
  6. I have been taking pyridostigmine since 2011. It was started at 30 mg tid and then increased to 60 mg tid a week or so later. I was very concerned about side effects as I am extremely intolerant to many medications but surprisingly I had none. I feel as if it helps me with fatigue, palpitations, tachycardia, gastric motility and maybe thermoregulation. In addition to pyridostigmine, I am on clonidine 0.1 mg bid, propranalol 5 mg bid, plaquenil 300 mg daily and neurontin 800 mg tid. Also 9 gms of salt. I am a potatoe lover too. Janet
  7. Hi, I take clonidine 0.1mg bid. For me it has along with other medications and conservative measures significantly helped control my POTS ( hyperadrenergic response ) symptoms. 0.1mg was supposed to be a starting amount but I was not able to tolerate an increase. Before taking clonidine even standing for very short periods of time would cause such jitteriness I felt like jumping out of my own skin. Because I started taking pyridostigmine about the same time as the clonodine I can not say which one had the most effect on restraining my tachycardia. Since I could only tolerate the starting dose of clonidine, propranalol 5 mg bid was added. I continue to have a problem with a very labile blood pressure but I dont think there is anything left to alter that. Janet
  8. Hi Tiffany, I just realized you had asked about weight loss as it related to lupus. I did not have any weight loss issues until 2010 at which time I started having increasing symptoms of delayed gastric emtying which was confirmed by a gastric empty scan. Im so sorry about the loss of your daughter Nora Renee. I cant imagine how difficult it must be for you and your family. I know its not the same but I lost my first at 11 weeks and was crushed. My heart goes out to you. Im praying peace, comfort and healing for you. Janet
  9. Hi Sophie, I have found compression leggings to be extremely helpful for pooling. They are 20-30 mmHg. Like Katie, I discovered the Discount Surgical website and order them from there. I am fortunate in that inspite of salt and fluid loading I do not have ankle or foot edema which of course would prevent one from wearing them. The leggings are also nice in that you can wear sandles with them. I also recently went back to a Physical Therapist for a few sessions to learn more skeletal muscle pump exercises which I believe should be helpful for pooling. As much as I do not enjoy it walking does help. I would love to try midodrine but I have too labile of a blood pressure. I hope you find something helpful. Janet
  10. Hi, I have a lupus diagnosis and am presently on plaquenil. I was first diagnosed with lupus by a Rheumotologist in 1999. At that time I was not interested in taking any medication I just wanted a diagnosis that explained all the symtoms I had been afficted with for the past nine years. During my third pregnancy (1990) I developed flu -like symptoms and oral lesions. After the pregnancy I never quite got over those problems. Then in 1992 I ended up with aseptic meningitis ( thought to be viral, CSF protein 112 ) . After that I developed a malar rash and many other problems. I think that marked the beginning of my autonomic dysfunction. I have a very complicated medical history and to make a long story short I continued to accumulate more problems. In 2005 they all caught up with me and I lost the ability to work. I was referred back and forth to a number of different doctors and was diagnosed with CFS, Fibromyalgia and POTS ( I shoud have been diagnosed in 2001. If only a TTT had been done after a syncapal episode at work ). In 2008 I was referred to a different Rheumotologist for re-evaluation ( the earlier one had retired ). He diagnosed me with degenerative disk disease and Raynauds and re-diagnosed me with lupus and fibromyalgia.The lupus diagnosis was based on a positive ANA history, malar rash, photosensitivity, oral lesions, joint pain, history of pleuracy and other rashes. He strongly encouraged me to take Plaquenil. He said being on it would help protect my kidney. I only have one because one of them was removed along with a large tumor in 1995. So I decided to follow his advice and start taking Plaquenil. After about six weeks into it I noticed the horrible rash on my scalp had vanished, other rashes had lessened and there was improvement in joint pain. I was prescribed 300 mg daily. I have been seeing an Opthamologist every six months for eye exams but was advised last week that once a year is now acceptable. I have been told that lupus may be the cause of my autonomic neuropathy and POTS. I hope this information is useful and you get the help and answers you need. It can be a very long and frustrating journey I know but hang in there. Janet
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