enko Posted June 26, 2011 Report Share Posted June 26, 2011 Hi all! I have few questions, sorry for bugging.. Unfortunately I'll have to wait for two and a half more months to see my dermatovenerologist. She saw me only once, made a scratch test, said that I have urticaria (factitia) and sent me home with antihistamine pills (I'm not from US, but the ones I'm taking are Zyrtec like, based on cetirizinum). Also said that I have foliculitis on my back.. I've been reading about mastocystosis and I think that there's a great chance I have it (headaches, tachy, itching, low bp, nausea, vertigo, presyncope..)a) I still don't understand where's the difference with masto and MCAD? Can someone help with that?b ) I take one pill (10 mg) in the morning, it does help with itching (although it still itches), but things get worse in the evening. Anyone with masto/MCAD having that kind of problems?c) Also, do you have feeling like that your throat is swollen? Even small pressure on my neck gives me a feeling of choking and I start coughing.. I also feel that lymph nodes on my neck are swollen, but my GP said "They are just sized like that" Maybe I have "Hypochondriac" written on my forehead?d) If I've got it correctly, mast cell disorders are related to immune system?Thank you in advance! Quote Link to comment Share on other sites More sharing options...
Godsgal Posted June 27, 2011 Report Share Posted June 27, 2011 Hi there....I'm mentally drained tonight but I'll do my best with the questions. As far as the masto vs. MCAD, they are treated the same according to Dr. Afrin. You probably feel poorly in the evening because your morning anti-histamine has worn off. Could you check with your doctor about taking another dose in the p.m.? Most docs won't approve it unless they know about this diagnosis because it's over the recommended dose. As far as the symptoms, yes I have them both. My throat bugs me also and for a while it felt like I had a large lump in it. Some times it feels like a tightness or a squeezing. My meds have helped this a lot. Some of my lymph nodes under my arm bothered me as well. Now of course that can be due to a billion things but mine had been bothering me like a year and Dr. Afrin also seemed to believe this was all mast cell problems. Maybe you could consider speaking to your doctor about taking your zyrtec type med at night also along with an h2 blocker such as tagamet or zantac. A lot of people with mast cell issues like zantac. Quote Link to comment Share on other sites More sharing options...
enko Posted June 27, 2011 Author Report Share Posted June 27, 2011 Godsgal thank you for your reply! It was very helpful Also one more thing if I can ask (forgotten about it before): after taking a shower my knees (and above them) turn red or reddish.. weird.. and itchy sometimes. I've tried changing the soap few times, didn't help. Anybody else?P.S. I just wonder how did I manage to squeeze in extra "s" in mastocytosis.. and not just once! Quote Link to comment Share on other sites More sharing options...
kclynn Posted June 27, 2011 Report Share Posted June 27, 2011 Don't have anything helpful to add. My son has terrible trouble with itchy skin after showers. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted June 29, 2011 Report Share Posted June 29, 2011 On the shower, are you taking one in hot water? That would contribute to problems for you potentially if you were. During my sickest moments, I can't even wash my hands in hot water. And being hot can cause mast cell degranulation. Shaving also seems to bother me too. Could that be it? And ask all the questions you want....I know I do! Quote Link to comment Share on other sites More sharing options...
enko Posted June 29, 2011 Author Report Share Posted June 29, 2011 Thank you kcmom *hugs* I hope that your son is doing well/better?Godsgal,that's an interesting thing you've said about showering in hot water! Before I enjoyed showers in hot water (not steaming ofc ), but now I simply can't stand it, although I do tend to go towards warmer water when I can (I don't stand being cold either, I'd rather be hot than cold). That would also probably explain why do I sometimes feel nausea after a shower..? It's probably related to low BP too.. And about washing hands in hot water - I've noticed that too! Before that would be normal water temperature for me, but now my hands feel like they are on fire, start shaking and turn red! Do you have that symptoms too? Also skin on them feels dry so after each time I wash my hands I have to use some cream to help it. If I have to be on the sun for just a short period of time I get a feeling that I will burst in flames from the inside and have to run for cover. It's enough to be in a warmer area and I'll develop at least some symptoms including headache, nausea and exhaustion (I'll sleep for a big part of the day) or slip into presyncope (I didn't fully faint yet).That info about heat is really interesting - I didn't know that by now! Quote Link to comment Share on other sites More sharing options...
enko Posted July 4, 2011 Author Report Share Posted July 4, 2011 also.. do you have twitching of muscles and pain in knees and feet? Quote Link to comment Share on other sites More sharing options...
Godsgal Posted July 7, 2011 Report Share Posted July 7, 2011 Yes I have muscle twitching and pain in my joints & bones. Things have been markedly better for me since starting these mast cell meds....thanks be to God! On the hand washing, I switched soaps to a more natural one and one without citrus and that helped a lot. Quote Link to comment Share on other sites More sharing options...
enko Posted July 7, 2011 Author Report Share Posted July 7, 2011 I'm glad that it got better for you I have to wait for two more months.. sigh.. Quote Link to comment Share on other sites More sharing options...
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