jasonmcgill

I would think itchiness would be an indication, from what it seems. Also, another question. Since Nicole is so bedridden right now, and only getting up to go to the bathroom one or two times a day for very brief periods (the rest of the day, it's a bedpan), what types of things can we do to condition her, and make sure she doesn't end of with bloodclots. I'm giving her massages every day, and she's stretching in bed as much as she can, but how do you know when you need to add some blood thinner? Any experience with this? (I'm sure there's too much experience, unfortunately)

Thanks for the warm welcome, everyone! We live in Providence, RI, and right now Nicole is just working with her PCP, who actually makes house calls and orders home blood-draws, among other things above and beyond the call of duty. However, he is really busy, and not a specialist himself (he is both a ND and an MD though). Years ago she went to Roy Freeman at Beth Israel Deacones in Boston, and another autonomic specialist in Boston (can't remember who right now...), but neither of them had sufficient treatment ideas, so Nicole just stuck with the Florinef and salt, and hoped for the best, while also pursuing other types of treatment for CFS stuff. We definitely need to reconnect with the autonomic specialists though. Looking elsewhere in New England and/or New York. And my dad lives in Chapel Hill, NC. Anyone have experiences with Dr. Caroline Klein at the UNC Department of Neurology? The mastocytosis angle is new to me, so I'm exploring that. Could you get a conclusive diagnosis with tests that could be done at home? Like I mentioned, she can't leave the house at all right now. Definitely curious about Procrit, although it seems that folks have mixed experiences with is. Also Desmopressin for increasing blood volume? As to Tammy's question about antihistamines, they are not part of Nicole's regular meds, but she does take them when dealing with allergies. I should have also mentioned that she once had a severe anaphylactic reaction in her Dr.s office a couple years ago while getting her regular weekly mineral infusion. She had bleached some of her hair earlier in the day, and suspects that her body freaked out because of that. Ended up using the Dr.s epi-pen, and now she keeps one with her at all times, but has never had to use it. I wonder if this gels with mastocytosis as well. Also, do folks with mastocystosis ever get these sever blood volume/flow problems, connected with POTS?

Hello all, this is an introduction for my wife Nicole, who is too ill to use the computer right now. I've been reading this forum off and on over the years, but now realize I need to integrate more fully into the community. I'm taking care of her as best as I can, but could really use some advice from you experts! Nicole is now 32 years old. She experienced bouts of tachycardia after exertion as a child and teen, then had a sudden onset of extreme orthostatic intolerance and symptoms of dysautonomia and ME/CFS in 1996, at age 20. She became unable to sit or stand up without her heart rate speeding up and her blood pressure dropping significantly. Spect scan showed a lack of bloodflow to the brain. She eventually was diagnosed with POTS and given Florinef, which she has taken to this day. The Florinef (with high-salt diet) got her back on her feet, albeit with less energy than before the initial onset, and with several other severe symptoms, such as cognitive impairment, which become greatly heightened during disease flare-ups. In 1998, Nicole learned that she has exertional intolerance, as she wore herself out and ended up in a severe relapse. Once again she was bed-bound, and this time with added symptoms such as multiple chemical sensitivity. She eventually pulled out of this relapse, but has never regained her previous level of health. In 2004 she suffered another relapse due to over-exertion, and since that time she has maintained a low-energy lifestyle and has to spend most of her time lying down. With the help of compression stockings (as well as Florinef and Metoprolol), she has only been able to stand, sit, and walk for brief periods. Her concentration is impaired, and she has a whole host of other symptoms, such as weakness (sometimes pronounced on her right side) and inflammation at the back of her head/neck. She also exhibits sensitivities to most treatments she has attempted. Recently she entered another relapse (after trying Tibetan/Ayurvedic herbs), and this one is the worst yet. She is unable to get up to go to the bathroom for most of the day, and has to use a bedpan. She is hypovolemic during relapses, and home IV saline treatment helped hydrate her for a number of days, until she had bad reactions to the fluids, most likely due to the pvc iv tubing. One night a couple weeks ago, after using the saline, her tongue began to swell, and her blood pressure spiked to 180/120 laying down. We were able to purchase glass saline bottles, but the pvc administration set gave her reactions as well. We have switched to oral rehydration (fluids, salt, sugars), with mixed results. She is worst in the morning, and feels extremely dehydrated after sleeping. Throughout the day she feels sick all through her body, and has to weather extreme bouts of nausea, adrenaline, pain, twitching, weakness, and fatigue. She also has no appetite, and ever since the saline reaction, her chemical sensitivities have heightened (i.e. her tongue will start to burn if someone enters the room wearing clothes that have been washed in fragranced detergent). Nicole's physician suggested she try Prednisone, and she has tried a very small amount, with mixed results. While it gives her a little bit of energy, it also flushes her face, makes her feel anxious, and produces a crash when it wears off. She is still taking Florinef and Metoprolol, as well as Zoloft, Clonapin, and Xanax. I should say, she also is on a birth control pill (since she was 18, for polycystic ovaries), and keeps her periods at bay for months at a time. Periods are very difficult for her, as she dips into extreme weakness and depression. However, she was having so much breakthrough bleeding over the past weeks that she let it go for a couple days, got really weak, but then seemed to be stronger afterwards. Things seem slightly more stable now. We are at a loss as to what to try next, and need help from knowledgeable physicians; but Nicole can't leave the house for appointments, nor could she withstand a stay in the hospital. At this time we feel that she could benefit the most from a house-visit by a specialist, or by a consultation between a specialist and her primary care physician. Any treatment ideas, especially for raising blood volume (esp. for the brain!)?