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Frugalmama

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  1. Have you looked at all at the MCAS/Mastocytosis info posted throughout the forum? For 15+ years I lived on Immodium, and had constant diarrhea. Like, all the time, everything I ate.... When I finally started looking into MCAS because of this forum and got to a good immunologist (who later discovered I actually have indolent systemic mastocytosis), we figured out that the "episodes" I was having were anaphylaxis. Benadryl now gets rid of the diarrhea almost immediately. I wish I had known that for the last decade
  2. Tryptase is a bit of a tricky thing . Mine has been recorded once at 13 and twice at 11 (the normal range used by our labs is up to and including 12) and I was diganosed last month with systemic mastocytosis via DNA test and a bone marrow biopsy. The hemotologist and the pathologist were shocked, as was I, as I was under the impression that tryptase had to be over 20 for systemic masto to be possible. Turns out it is
  3. Welcome villen . I was extremely symptomatic for thr latter half of my second pregnancy and throughout my third (I have become progressively worse, and have also just been diagnosed with systemic mastocytosis). I had a holter monitor on for 48 hours when I was about 8 months pregnant with our third, and my average heartrate over the 48 hours was 99 beats per minute . And I was already completely sedentary at that time since I'd black out if I stood for more than a minute or so. Anyways, I wasn't on meds at all until I was breastfeeding #3, and then I tried Propranolol (which honestly did noth
  4. Diamond, there is a good list on pages 5 and 6 here: http://tmsforacure.org/documents/ER_Protocol.pdf . It also varies from person to person, though
  5. Yes, this is such a tricky topic. Like doozlygirl, I have mast cell disease (systemic mastocytosis), and any kind of physical activity (including standing for a couple of minutes, walking for more than a couple of minutes, lifting anything, etc.) causes anaphylaxis. So exercise is definitely out for me right now . But I am thrilled to hear that so many people are seeing positive effects from their exercise routines - even 10% improvement can be huge in terms of quality of life!!
  6. Hi again! The only skin manifestation I have is flushing (and before being on all the anithistamines, I would off and on get burning and/or itchy skin) - but no spots whatsoever. You should try an immunologist - they can test your tryptase, n-Methylhistamine, etc. and go from there. One thing you can try if you tolerate it is Benadryl - if your symptoms are relieved when you take it, there's a very good chance that mast cells are the culprit. Anaphylaxis can look different in each patient, but mine typically follows the pattern of: extreme weakness, fatigue and flushing, then awful abdomina
  7. Batik, I'm sorry to hear you are going through all of this. I could have written your first paragraph - I also started with migraines, then was diagnosed with CFS, and also misdiagnosed with Celiac Disease and then with IBS. Although I had minor bouts before, I started experiencing constant orthostatic intolerance during my second pregnancy five years ago. Over the past eight months, though, I started looking at mast cell issues, and just last month was diagnosed with indolent systemic mastocytosis. The hope is that with proper meds, my POTS symptoms will also diminish (almost every person
  8. Use it . I totally get that it's hard to overcome the "what will other people think?" mentality, but it's your birthday and you should get to enjoy it! I started using a wheelchair last year when I was out with someone else (we have three little kids, so my hubby couldn't push the chair and stroller by himself), and it was AMAZING the difference it made. I was totally shocked! It let me actually enjoy what we were doing rather than trying to just survive it. Ignore what other people think - I know it's hard, but it will get easier each time you do it. . I also always felt silly sitting down
  9. My cardio had me wait until I was done breastfeeding before I started anything except a beta blocker. I'm glad I went that route, as none of the meds actually helped my symptoms
  10. I didn't experience any symptom relief during any of my pregnancies. It's true that your blood volume increases when you're pregnant, but there are a whole host of other physiological changes taking place . For the last two and a half months of my last pregnancy (when I was in the worst shape), I went for weekly IVs, and it helped with some of the symptoms for the day or so following the IV. At the suggestion of my cardio, I didn't take any meds until after I was done breastfeeding my youngest - I'm very glad I went that route, as the meds didn't work anyways . As for labour, I found the b
  11. Yes, this happened to me in December (ironically on a flight to an autonomic clinic!). As I normally am when flying, I was fast asleep for the first 75 minutes of the flight. I woke up to tachycardia, flushing and horrendous nausea and abdominal pain. I knew the only thing that would help would be to lie down, and since the flight was packed I ended up lying down on the floor in front of our seats (thankfully we happened to be at the bulkhead). I stayed there with ice on me until I couldn't anymore, and spend the rest of the flight glued to the toilet and vomiting. I have to tell you that
  12. I go for as many massages as my insurance will cover (every two months or so), and I find it helps short term. Since massage stimulates blood flow to the area massaged, I do find a marked difference after my neck and shoulders are worked on. It's important to find an excellent therapist, though, as some specialize more in relaxation than therapeutic massage. Jpjd, I am currently being treated for mast cell activation, and I found that it doesn't seem to be the massage that causes issues, but rather the (very natural) scent of the massage oil my therapist uses. I am now booking in for her fi
  13. I am also been worked up and treated for mast cell disease, and I can't handle direct sunlight at all. I live in Winnipeg, and even in the dead of winter when it's -30 and there is direct sunlight on me, I become extremely symptomatic. I also have a huge problem with my eyes and sunlight, but I'm not sure if it's part of MCAS, POTS, or migraines
  14. I don't think it's a quick process, unfortunately. I have been on the treatment protocol for about four months, and have not seen much improvement. That being said, I do now see tiny (5-10 minute) breaks between epidsodes of feeling awful. I'm starting to think that the "chronic fatigue" that I was previously thought to have was actually back to back (to back to back....) reactions. My immunologist today told me that it can be a very, very long process of finding the right cocktail for your symptoms, as everyone is so different. I'm about to start Ketotifen, and I have heard from other pa
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