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BuddyLeesWife

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  1. Ernie I can't imagine living with that possibility in the background but that's what you have been doing for years - LIVING and fighting to find the source of your disorder and adapting your lifestyle to LIVE to the fullest. You are an extremely strong person and I'm sure that this strength continues to protect you. Hopefully sharing your secret will lighten your burden somewhat - it just gives me more hope that amazing things are possible when you choose the right attitude. You are an inspiration!
  2. Have you thought about marriage counceling? We've been married 10+ years and there have been times when this disorder has overwhelmed both of us but fortunately we seem to take turns and haven't both been down at the same time. At my worst, I felt like I was missing out on things because of his limitations and then guilty on top of that for being selfish. We were able to come up with some ideas that allow me to be more active but not to his exclusion. At his worst, he was irritable, frustrated and depressed with this disorder and that would overflow into his dealings with me and also family, friends and co-workers. Fortunately he was able to work with a therapist but what probably helped the most is that his medications eased some of his symptoms and he feels better. Wishing you both the best of luck as you try and sort things out.
  3. Please keep faith that things will get better. My husband had a 4 month period when he was diagnosed with Epstein-Barr Virus on top of this stuff where he was mostly bed-ridden. It was awful and he suffered greatly and was very depressed - it was also during the holiday season in 1998 which added to his guilt. This was before we had a diagnosis of NCS and I stuffed him with every type of food/vitamin/supplement that is supposed to support the immune system. Who knows what worked (probably the 16 hours of sleep a day) but he did improve and has not had a similar period since. Could you have picked up some sort of bug/virus/infection that is causing this to be an everyday thing? We were actually lucky that his throat flared up or they probably wouldn't have found the EBV.
  4. I definately agree with scheduling for the first thing in the morning. Also talk about prep options with your doctor because we learned after the fact that there was an alternative for using Gatorade that would have at least tasted better and my Mom followed a less rigorous 2-day prep that was easier on her system. Unfortunately the goal of the prep is the same no matter what path you take
  5. My husband has Neurocardiogenic Syncope (NCS) and as part of that he was losing control of his bowel & bladder - his body seemed to just flush out anything it had. Most of the time he was completely fine and then WHAM. His cardiologist referred him to a urologist who ruled out other causes and diagnosed him with Neurogenic Bladder. He told us that while he didn't think he would be able to stop the episodes, he did think he could buy him some time (hopefully 15-20 minutes) and he thought that it might help with the bowel as well. He prescribed Detrol LA and IT HAS WORKED WONDERS! Of all of the symptoms he has had, this was the poised to be the straw that broke the camel's back. He has been on it since June and as promised, while he still may have an episode he has had time to deal with it. His only side effect has been severely dry mouth but recently he was started on Mestinon and the dry mouth seems to have eased as well. If you do a search in this forum on "incontinence" you will see my previous posts (mainly because I can never remember how to spell diarrhea). If you read into the details of Detrol you will find that it is a smooth muscle anti-spasmotic and I believe both the bladder and bowel are smooth muscle. This has been a wonder drug for him and may be worth consulting with your doctor.
  6. http://www.med.umich.edu/opm/newspage/2005/nanoparticles.htm Research at the University of Michigan. ANN ARBOR, MI - University of Michigan scientists have created the nanotechnology equivalent of a Trojan horse to smuggle a powerful chemotherapeutic drug inside tumor cells ? increasing the drug's cancer-killing activity and reducing its toxic side effects. Folic acid, or folate, is an important vitamin required for the healthy functioning of all cells. But cancer cells, in particular, seem to need more than average amounts. To soak up as much folate as possible, some cancer cells display more docking sites called folate receptors on their cell membranes. By taking advantage of a cancer cell's appetite for folate, U-M scientists are able to prevent the cells from developing resistance to chemotherapeutic drugs.
  7. More conflicting research. http://www.medscape.com/viewarticle/512905 NORVIT: The Norwegian Vitamin Trial Clinical Results The primary endpoint, a composite of nonfatal and fatal MI (including sudden death) and nonfatal and fatal stroke, occurred in approximately 18% of each of the placebo, folic acid, and vitamin B6 groups. In the group that received folic acid + vitamin B6, however, there was a significant increase in primary endpoints (P = .029) vs the other 3 groups. Event rates, including individual components of the primary endpoint, were higher in the folic acid + vitamin B6 group compared with either folic acid or vitamin B6 alone or placebo (Table 1). Cancer rates were higher in both of the folic acid groups. No Proof Yet Either Way ESC-designated discussant Ian M. Graham, FRCPI (Royal College of Surgeons, Dublin, Ireland), agreed the relationship between homocysteine and vascular disease has not "so far" been established as causal. He also agreed that the use of B vitamins cannot currently be recommended in post-MI patients, although lack of proof of benefit does not prove that there is no benefit, he noted. He suggested that NORVIT might not have been adequately powered, the factorial design might have been too complex, and the trial incapable of isolating the effect of folate per se. Recommendations for Intake of Folic Acid and Other B Vitamins The American Heart Association (AHA) currently advises that "So far, no controlled treatment study has shown that folic acid supplements reduce the risk of atherosclerosis or that taking these vitamins affects the development or recurrence of cardiovascular disease." The AHA says that screening for homocysteine levels in the blood may be useful in patients with a personal or family history of cardiovascular disease but who don't have the well-established risk factors (smoking, high blood cholesterol, high blood pressure, physical inactivity, obesity, and diabetes). Although evidence for the benefit of lowering homocysteine levels is lacking, the AHA says that physicians should advise patients at high risk how to ensure that their diet contains enough folic acid and vitamins B6 and B12 in their diet.
  8. From the Folate fact sheet: http://ods.od.nih.gov/factsheets/Folate_pf.asp Folic Acid and Cancer Some evidence associates low blood levels of folate with a greater risk of cancer [52]. Folate is involved in the synthesis, repair, and function of DNA, our genetic map, and there is some evidence that a deficiency of folate can cause damage to DNA that may lead to cancer [52]. Several studies have associated diets low in folate with increased risk of breast, pancreatic, and colon cancer [53-54]. Over 88,000 women enrolled in the Nurses' Health Study who were free of cancer in 1980 were followed from 1980 through 1994. Researchers found that women ages 55 to 69 years in this study who took multivitamins containing folic acid for more than 15 years had a markedly lower risk of developing colon cancer [54]. Findings from over 14,000 subjects followed for 20 years suggest that men who do not consume alcohol and whose diets provide the recommended intake of folate are less likely to develop colon cancer [55]. However, associations between diet and disease do not indicate a direct cause. Researchers are continuing to investigate whether enhanced folate intake from foods or folic acid supplements may reduce the risk of cancer. Until results from such clinical trials are available, folic acid supplements should not be recommended to reduce the risk of cancer. Folic Acid and Methotrexate for Cancer Folate is important for cells and tissues that rapidly divide [2]. Cancer cells divide rapidly, and drugs that interfere with folate metabolism are used to treat cancer. Methotrexate is a drug often used to treat cancer because it limits the activity of enzymes that need folate. Unfortunately, methotrexate can be toxic, producing side effects such as inflammation in the digestive tract that may make it difficult to eat normally [56-58]. Leucovorin is a form of folate that can help "rescue" or reverse the toxic effects of methotrexate [59]. There are many studies underway to determine if folic acid supplements can help control the side effects of methotrexate without decreasing its effectiveness in chemotherapy [60-61]. It is important for anyone receiving methotrexate to follow a medical doctor's advice on the use of folic acid supplements.
  9. One last resource. The National Institute of Health Office of Dietary Supplements. From the B12 Fact Sheet: Researchers have long been interested in the potential connection between vitamin B12 deficiency and dementia [28]. A recent review examined correlations between cognitive skills, homocysteine levels, and blood levels of folate, vitamin B12 and vitamin B6. The authors suggested that vitamin B12 deficiency may decrease levels of substances needed for the metabolism of neurotransmitters [29]. Neurotransmitters are chemicals that transmit nerve signals. Reduced levels of neurotransmitters may result in cognitive impairment. In 142 individuals considered at risk for dementia, researchers found that a daily supplement providing 2 milligrams (mg) folic acid and 1 mg B12, taken for 12 weeks, lowered homocysteine levels by 30%. They also demonstrated that cognitive impairment was significantly associated with elevated plasma total homocysteine. However, the decrease in homocysteine levels seen with vitamin supplementation did not improve cognition [30]. It is too soon to make any recommendations, but is an intriguing area of research. What is the health risk of too much vitamin B12? The Institute of Medicine of the National Academy of Sciences did not establish a Tolerable Upper Intake Level for this vitamin because Vitamin B12 has a very low potential for toxicity. The Institute of Medicine states that "no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals" [7]. In fact, the Institute recommends that adults over 50 years of age get most of their vitamin B12 from vitamin supplements or fortified food because of the high incidence of impaired absorption of B12 from animal foods in this age group [7]. http://ods.od.nih.gov/
  10. Here's another article to add to the confusion. Looks like it is protective for breast cancer but maybe not so good for prostate cancer. http://psa-rising.com/eatingwell/vb12_folate04.html The researchers say: "Our results suggest that factors contributing to folate status are not protective against prostate cancer. On the contrary, vitamin B12, associated with an up to 3-fold increase in risk, and possibly also folate, may even stimulate prostate cancer development. These findings are novel and should be explored further in future studies."
  11. Here's a Mayo article that may explain the concern regarding B12 and Cancer cells. I'll look for an updated article. Mayo Clinic develops new way to locate cancer with Vitamin B12 Information for patients Mayo Clinic has developed a new way to locate cancer using a special form of Vitamin B12. Douglas Collins, M.D., a Mayo Clinic radiologist, working with a biochemist from the University of Minnesota, has found a way to attach a radioactive molecule to Vitamin B12. The radioactive B12, when injected into the human body, shows brightly on conventional gamma imaging scans. This new testing method may make it easier to locate hard-to-find cancers. It works because cancerous cells absorb great quantities of Vitamin B12, while healthy body tissues only absorb small amounts. Scans detect and show the radioactive molecule attached to the vitamin, allowing physicians to locate areas of radioactive B12 concentration. The areas of concentration indicate the location of cancer. Mayo Clinic has studied this testing method in a small group of patients who had previously diagnosed cancers, including breast, lung, bone, thyroid, colon prostate and brain cancers. The B12 test was able to correctly locate the cancer in 90 percent of the patients. No clinical studies are currently in progress associated with this development, but Mayo Clinic plans to continue its research into the use of Vitamin B12 in cancer detection and treatment. In summer 2000, Mayo Clinic will begin animal studies to find ways of treating cancer with B12. Research will investigate ways to attach radioactive compounds known to destroy cancerous cells to Vitamin B12. Can I get this test? More research is needed before this test will be available to the general public. The B12 test is still under development, and Mayo Clinic is not actively recruiting study participants at this time. Why does cancer absorb more B12 than healthy tissues? Vitamin B12 is an essential building block of life. Any group of fast growing cells, such as a tumor, will use a lot of B12. In fact, research has shown that tumor cells will grow extra B12 receptors to make sure they get the B12 they need. If cancer likes B12 so much, does that mean taking B12 makes cancer worse? There is no conclusive evidence that B12 makes cancer worse. People who have concerns about cancer should NOT cut back on Vitamin B12. This can deprive healthy cells of the vitamin and can lead to serious medical problems. Did all the patients in this study have cancer? No. Some of the patients had suspected cancers that were later ruled out by surgery or other tests. The B12 test correctly ruled out cancer in these patients. This test may prove to be an effective way to rule out cancer and prevent unnecessary surgeries. Will taking large amounts of B12 before other imaging tests lead to a better result? No. This test uses a special type of B12 that has a radioactive molecule attached to it. Regular B12 will not affect imaging tests in any way. People should not change their normal dosage of Vitamin B12 without consulting a physician or dietician. Do your results show that mammograms do not work for women with dense breast tissue? No. We did not study the effectiveness of mammograms. We only looked at the results of the B12 test. Mammogram currently is the best test for detecting breast cancers, and this study should not deter any woman from getting regular mammograms. Women with dense breast tissue may have inconclusive results from a mammogram and will need more follow up. Our results led us to believe that the B12 test may become another breast cancer screening option for these women. Will this test replace current methods of diagnosing breast cancer? Probably not. There are several ways to effectively diagnose breast cancer, but sometimes these methods cannot find the exact location of the tumor inside the breast, making it hard to remove the cancer surgically. In these cases, the B12 test could be performed to locate the cancer. What are the side effects of using radioactive B12? There are few effects from using radioactive Vitamin B12. In fact, the radiation from this test is less than that from many other standard imaging tests. How did Mayo Clinic and the University of Minnesota come together to work on this project? Dr. Collins and University of Minnesota scientist Harry Hogenkamp, Ph.D., have worked together for many years. Their working relationship began when Dr. Collins was a medical student at the University, where Dr. Hogenkamp teaches biochemistry. The two continued to work together after Dr. Collins came to Mayo Clinic. Dr. Hogenkamp manufactures the Vitamin B12 and other elements needed for this test and sends them to Mayo Clinic where Dr. Collins puts them together for his research.
  12. Maybe these exerpts will help with the explanation http://www.pediatricnetwork.org/medical/CF...hannonstudy.htm Measurements of norepinephrine while lying down and standing up revealed "hyperadrenergic" orthostatic intolerance, meaning that there was an excessing blood level of norepinephrine while standing. Further testing revealed reduced norepinephrine clearance from the blood stream, and impaired increase of blood levels of norepinephrine after administration of tyramine. The authors analyzed the sequences of the norepinephrine-transporter gene and found an abnormality that impaired the function of this gene in the patient and her twin. They hypothesized that this specific genetic abnormality was the cause of the OI and that "Genetic or acquired deficits in norepinephrine inactivation may underlie hyperadrenergic states that lead to orthostatic intolerance." In a paper written in 1988 the symptoms of CFS were compared to cocaine withdrawal1, which still remains as an excellent model for the illness. Interestingly, cocaine inhibits norepinephrine reuptake, thus acting in a similar manner to the gene deficit described in this paper. It is because of this deficit that patients experience symptoms suggestive of not enough norepinephrine (adrenaline) simultaneously with too much norepinephrine, a paradox, which underlies much of the confusion regarding CFS. It may be that a physiologic mishandling of norepinephrine lies at the root of both conditions.
  13. My husband's mouth is always dry and we have learned that that is the worst for dental health. The dentist just put him on three peridontal cleanings a year to try and help. So far, no cavaties but they were not happy with the condition of the gums. After discussing with the dentist, we bought an electric toothbrush and it seems to be doing a good job - we'll know after his next visit but no more tenderness or bleeding, even when flossing. I can tell that it does a tremendous job on my teeth and my gums also feel healthier but it does take a while to get used to. (We have the Oral B Professional Care). I know there have been previous posts by Merrill regarding dental health which included detailed suggestions - you may want to do a search.
  14. List, I reposted this information here so you would see it. Beverly at Dr. Grubb's office had my husband start with 1/2 of a 60mg tablet 2x/day and then 3 times per day, then switch to 1 tablet 2 times/day and potentially moving up to 3 60mg tablets a day. At that point, he could opt to switch to one of the Timespan extended release tablets which is 180mg. I know someone else on the forum just recently had a problem switching from the 60mg to the extended release and decided to stick with the 60mg tablets. The following is from the Myasthenia Gravis website ( http://www.myasthenia.org/information/Mestinon.htm ) regarding Mestinon. It seems as though the Timespan, extended release form of the drug is for people who need to take it during the night or they wake up too weak in the morning. I read somewhere else that if you have any type of motility issues, you will most likely get an inconsistent dose of the medication when using the extended release form (of course, I can't find that statement now but I'll keep looking). The info below does say that the absorption can be erratic and the side effects more likely when using the Timespan version. We are planning to stick with the 60mg tablets. Are all pyridostigmine or Mestinon? preparations equal? No! Regular pyridostigmine or Mestinon? comes in two forms: Mestinon? 60 mg. tablets and Mestinon Syrup? 60 mg./5 ml. The greatest effect usually occurs in 60 to 90 minutes and lasts for 3 to 4 hours. Mestinon Timespan? is an extended release form of pyridostigmine that slowly releases its active ingredients over an approximately 12-hour period. When prescribed, Mestinon Timespan? is usually given as a bedtime dose so the patient does not need to awaken for every 3 to 4 hour dose of regular Mestinon?. Mestinon Timespan? should never be substituted for regular Mestinon?.or generic pyridostigmine. Mestinon Timespan? should never be crushed. The possible adverse effects of Mestinon Timespan? are the same as those for regular Mestinon? or generic pyridostigmine , but are possibly more likely to occur. The absorption and effect of Mestinon Timespan? are sometimes erratic. Some physicians and patients prefer to schedule nighttime doses of regular Mestinon? or generic pyridostigmine. Regonol Solution for Injection? 5 mg./ml. is sometimes required when patients cannot take anything by mouth. The physician will prescribe 1/30th of the usual oral dose by IM injection or very slow IV administration. No single fixed dose schedule will suit all patients with MG, whose medication requirements vary from time to time, day to day, and in response to stress or infection. Different muscles respond differently to a given dose of Mestinon? or generic pyridostigmine. The physician will select a dose that produces the best response in the most vitally affected muscles.
  15. The following is from the Myasthenia Gravis website ( http://www.myasthenia.org/information/Mestinon.htm ) regarding Mestinon. It seems as though the Timespan, extended release form of the drug is for people who need to take it during the night or they wake up too weak in the morning. I read somewhere else that if you have any type of motility issues, you will most likely get an inconsistent dose of the medication when using the extended release form (of course, I can't find that statement now but I'll keep looking). The info below does say that the absorption can be erratic and the side effects more likely when using the Timespan version. We are planning to stick with the 60mg tablets. Are all pyridostigmine or Mestinon? preparations equal? No! Regular pyridostigmine or Mestinon? comes in two forms: Mestinon? 60 mg. tablets and Mestinon Syrup? 60 mg./5 ml. The greatest effect usually occurs in 60 to 90 minutes and lasts for 3 to 4 hours. Mestinon Timespan? is an extended release form of pyridostigmine that slowly releases its active ingredients over an approximately 12-hour period. When prescribed, Mestinon Timespan? is usually given as a bedtime dose so the patient does not need to awaken for every 3 to 4 hour dose of regular Mestinon?. Mestinon Timespan? should never be substituted for regular Mestinon?.or generic pyridostigmine. Mestinon Timespan? should never be crushed. The possible adverse effects of Mestinon Timespan? are the same as those for regular Mestinon? or generic pyridostigmine , but are possibly more likely to occur. The absorption and effect of Mestinon Timespan? are sometimes erratic. Some physicians and patients prefer to schedule nighttime doses of regular Mestinon? or generic pyridostigmine. Regonol Solution for Injection? 5 mg./ml. is sometimes required when patients cannot take anything by mouth. The physician will prescribe 1/30th of the usual oral dose by IM injection or very slow IV administration. No single fixed dose schedule will suit all patients with MG, whose medication requirements vary from time to time, day to day, and in response to stress or infection. Different muscles respond differently to a given dose of Mestinon? or generic pyridostigmine. The physician will select a dose that produces the best response in the most vitally affected muscles.
  16. My husband takes Cerefolin. He had some slight gastro problems for a few days at the start but no other side effects. He seems to think better - it wasn't an immediate influx of energy, just much less brain fog and noticeably more clarity. Good Luck. He is also doing well on Mestinon and that does seem to be giving him more stamina to get through a long work day. He has only been on that for a couple of weeks and he did have some twitching (while sleeping) and headaches in the beginning.
  17. Following is a link to a savings certificate for Mestinon (up to $20). We are lucky that our insurance covers it so our co-pay is minimal. It is only good for the 60mg tablets. This program is set to end on November 15th but the coupons will be honored until March 2006. I included the letter from the manufacturer http://www.mestinon.com/coupon.jspf - for coupon http://www.myasthenia.org/mgfa/Mestinon_letter.doc - manufacturer letter
  18. I use the Medscape Search function ( www.medscape.com ). It requires a free registration but I have been using it for over a year and I have not received any advertisements or junk email from them. If you use the advanced search feature, you can sort the responses by date which means you can just see anything new that has been published on your topic and not have to sift through pages of old and obsolete material. The drawbacks are that most of the information is really technical as it is written for the health care profession and it is not specific to autonomic problems. I signed in as "other health care professional".
  19. Please be aware that Viagara can cause a sudden and severe drop in blood pressure - Dr. Grubb warned about it.
  20. We have also been to U of M - I will send you a personal message about our experience.
  21. My husband was just prescribed Mestinon. This is how they suggested he ramp up the medication: -1/2 60mg tablet 2x/day - increase to 1/2 tablet 3x/day - increase to 2 tablets 2x/day - increase to 3 tablets 3 times/day At that point, he would be at 180mg/day which is the same dose as the XR version. Assuming that it works for him and that his body can tolerate the dosage he could then switch over to the 180mg XR. He took his first 1/2 pill last night and his twitching was noticeable to me but he slept fine so he took another 1/2 this morning.
  22. My husband is aware - I call it a "meltdown" as he kind of just sinks to the ground. He is able to answer questions correctly but not get up unless assisted. Fortunately he always has a warning that it is going to happen so he can get safe. I'm not sure if this form of fainting is better but the warning is a blessing.
  23. I'm definately interested as my husband has NCS and his identical twin brother suffers from much more frequent and debilitating syncope and seizures. None of the doctors are interested in their situation. To me it seems as though they would be great research subjects.
  24. I try to not take offense at any forum responses because I know how difficult it is for me to write and convey my tone or emotion or emphasis and I know what I am trying to get across (plus I am a sarcastic but good natured girl). I believe you are wise to suggest contacting a physician and for expressing your concerns. I hope you aren't forgoing support because someone may have taken offense at something you have written - they will get over it.
  25. Before diagnosis and treatment, my husband used to get those types of rude/irrational outbursts (also without any violence) but hurtful and confusing to others just the same. My guess is that it has been the Effexor as he was on a high dose of Xanax for what was first diagnosed as anxiety. He also went through Cognitive Behavioral Therapy (CBT) during that time (about 4 years ago) and I know he is much better at recognizing and controlling any potential mood slips.
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