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Old 06-07-2007, 10:37 AM   #61
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lilyian HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

The basic meds that the masto researchers will start people on are: zantac (prescription), zyrtec, allegra, and singulaire. If those don't work, they might try the masto med gastrocrom.

The primary problem with most doc is that even if they do take enough of an interest to want to help you, they just don't have the knowledge. Those who know a bit will often call one of the masto researchers around thr country and get advice from them regarding how to treat you. That is a help at least rather than have them guess it out.

 
Old 06-08-2007, 08:41 PM   #62
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Re: Can someone have mastocytosis and still have negitive blood tests?

Do you have any specific knowledge about meds for joint pain? This is an intermittent problem, not a day to day problem. But when it hits, it is horrendous, and can go on for days to weeks at a time. My doctor tends to support more standard pain meds, but I would propose something else if I knew which way to go.

 
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Old 06-14-2007, 12:31 PM   #63
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Re: Can someone have mastocytosis and still have negitive blood tests?

I use Advil for my joint pain. Mine is intermitent too. I just had a bout a week ago and could hardly get up the stairs.. and then it just "goes Away". I think they think I am nuts when it happens cause it is always for no appearant reason. I jsut wake up and my knees kill me...

 
Old 06-18-2007, 12:46 AM   #64
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Re: Can someone have mastocytosis and still have negitive blood tests?

Just to let everyone know, I went to an Immunologist on Friday and he put me on h1 and h2 blockers. I haven't seen any improvement yet. Does anyone know specifically what they are meant to do? Will I notice a difference in how I feel during day to day life? Thanks! Mel

 
Old 06-20-2007, 07:26 AM   #65
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Re: Can someone have mastocytosis and still have negitive blood tests?

I'm not exactly the scientific wiz, but, as I understand it the H1 blockers (like Allegra, Claritin, Benadryl) address the histamine receptors which cause wheezing, tearing of the eyes, itchy skin, etc. The H2 receptors line the digestive tract, and require the use of things like Pepcid or Zantac. There is an H3 receptor also, I think, but I don't know much about that nor do I think it plays into mastocytosis.

 
Old 06-21-2007, 05:06 PM   #66
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Re: Can someone have mastocytosis and still have negitive blood tests?

Hi, I have had systemic mastocytosis for many years - first cutaneous and then/now systemic. H3 blockers should help with brain fog and other cognitive issues that are all too familiar to people with masto - but I don't know of any out there. The other thing I wanted to share is that due to severe depression, tinnitus and pretty bad osteoporosis (secondary to masto - especially those of us with low tryptase levels), I put myself on magnesium taurate after doing lots of amateur research. About a month ago I realized that my masto had been unusually stable for many months. I then remembered that in my reading about magnesium taurate, I discovered that taurine is a cell stabilizer. I know it has made a huge difference to me and I'm certainly not going to go off of it. I've been able to reduce my masto meds substantially and still be more stable. Unfortunately the tinnitus is still really bad but I'm sure glad I discovered magnesium taurate's affect on masto - for me anyway.....

I also want to mention that PLEASE - if you have masto carry an epipen after being shown the correct way to use it. I had been stung often, without reacting, through my life even in the first few years with masto. Then one day I was stung by a bee and almost immediately I went into vascular collapse. Miraculously my friend stopped by and found me unconscious with an epipen stuck in me. She called 911 and they came. When I woke up in the ER I was told that I had had no pulse and if they had gotten to me 30 seconds later I would have died! Three weeks later it happened again. I am now on lifeline. The masto specialist said that it's important to lie down once you give yourself epi, and also be very careful not to ***** your thumb or other finger with the epi because it damages the blood vessels and you could lose the finger.

Podiecat

 
Old 06-22-2007, 08:06 AM   #67
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Re: Can someone have mastocytosis and still have negitive blood tests?

what is your trytase level? what is considered low?

 
Old 06-22-2007, 01:17 PM   #68
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Re: Can someone have mastocytosis and still have negitive blood tests?

Hi Chris,

I don't have my labwork right here but I believe it was only about 10. I was flaring when it was done but it was not during or right after anaphylaxis, which is when it should be done. I'm sure it would have been higher in that case. My urine histamine is also low now. I had had a punch skin biopsy done in 1985 to figure out what the dots were. That report and a physical exam plus my history were enough for Dr Castells to label my masto as indolent systemic mastocytosis. Much to her disappointment and frustration, I have refused to have a bone marrow biopsy done for many reasons.

The studies show that those masto patients with high tryptase have less of a serious problem with osteoporosis. If you want access to a huge amount of masto info, join the mastocytosis listserve and search through the forum.

I'd be happy to answer any other questions, but with masto each case can be very different....... Podiecat

 
Old 07-03-2007, 12:32 PM   #69
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Re: Can someone have mastocytosis and still have negitive blood tests?

Hey, Just wanted everyone to know that I saw the Hemotologist and he was very kind. Asked lots of questions and knew a fair amount of information about the disease. He is sending me for a sono/ultra sound of my liver, spleen and pancreas and also scheudling my bone marrow density. He said after all of that he will send me to Gainesville, Fl, they have a teaching university there and he said they are more familiar with the disease there than here. It is only 2 hours away so it is not as far as NIH!!! At least he is up for more testing. I will let you know how it goes.

Chris

 
Old 07-25-2007, 01:56 PM   #70
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Re: Can someone have mastocytosis and still have negitive blood tests?

Quote:
Originally Posted by mel222 View Post
Just to let everyone know, I went to an Immunologist on Friday and he put me on h1 and h2 blockers. I haven't seen any improvement yet. Does anyone know specifically what they are meant to do? Will I notice a difference in how I feel during day to day life? Thanks! Mel
Hi. You should have seen an immediate effect. I wonder if the doseage was not high enough? It also depends upon the type symptoms you have. For example, if you flush, then the flush should have gone down or completely away within 30 minutes. If you have GI pain, then that should also have subsided within 30 minutes or so. What meds did you try? The typical ones that the masto specialists use are: zantac, zyrtec, allegra, & singulair. If those don't work, then they might adjust the doses or try hydroxyzine or gastrocrom (a masto med). Generally, they start with the first ones I listed, though. Sometimes it just takes for the doctor to tinker with the dose and the combination of meds to find the right match for you.

 
Old 08-15-2007, 12:46 PM   #71
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Re: Can someone have mastocytosis and still have negitive blood tests?

Hey everyone, wanted you to know that my bone marrow came back as mild system mast cell disease.. Have no idea what all that means? They are sending me to a local cancer center cause my bone marrow appearantly had some additional abnormalities. My latest Tryptase serum level was 22.9 and the stains they did on my bone marrow were positive. I also have what they call a fatty liver, it showed on a sono and they said they may want to biopsy? has anyone had this done? Any thoughts??? I am really only on one prescription medicine right now and take Claritan during the day?

 
Old 08-30-2007, 12:18 PM   #72
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Re: Can someone have mastocytosis and still have negitive blood tests?

Question,

has anyone with masto every had an episode where their eyes felt funny? it is hard to explain, besides I felt like they were tearing and they weren't. It was like looking through water? and the I kept getting bright flashes from the lights in the room. I only ask cause this has happened twice now and I always feel very faint while it is happening and almost like I was having an anxiety attack??? Help!
Chris

 
Old 09-01-2007, 06:33 AM   #73
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Smile Re: Can someone have mastocytosis and still have negitive blood tests?

Hi,

I jumped on the internet tonight to search on itchy skin when I exercise.

I've always had really full on painful itching with exercise, mostly on my thighs, torso and stomach. I now try to go to an air-conditioned gym which helps but the itching can sometimes happen no matter what. Once I went for a run around the block and the itching was so bad that I ended up fainting on the side of the road.

I've always said that I must be allergic to my own sweat. I have just read about urticaria and mastocytosis and now little light bulbs are going off all over the place.

I have been a fainter/low bp almost my entire life. I remember fainting after being bitten by a spider, after putting on Calmoine Lotion (everytime until they changed ingredients), but then again I also sometimes fainted if i hit my funny bone or head. Hmm..

Over the years been tested for all sort of things (its not epilepsy) and been told that I'm prone to low blood pressure and fainting. I've had a couple of fainting spells over the last month - one due to abdominal pain in the middle of the night (weird that i fainted even though i was already lying down!). So my doctor is actually sending me to a neurologist again next week. But I'm thinking maybe I should get him to test for me for mastocytosis before I go???

A strange thing - i was recently tested for things like vitamins and minerals, anemia, lupus, thyriod etc (all good) but one of the four tests they do for rheumatoid arthritis came back positive, although doc doesn't think I have that. I did the test again a month later, but nothing.

I've also got severe pain in my wrist, which I just thought was RSI. Just stared to see a physio who thinks maybe to do with nerves, but hasn't fixed it yet and it really feels like its in the bone. Also I have a degerertive disk in my neck, which a muscular skeletol specialist thinks is what is causing awful pain in my shoulder.

I had some weird red spots on my back before...they appear every now and then for the last few years. I went to a doctor once who said it was probably a fungal infection but the fungal cream i used on them didn't work very well, if at all.

Soooooo....after reading all that, if anyone could comment that would be fab. Do you think it's worth getting tested?

Cheers!

 
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