Finally a Doc that listens
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Finally a Doc that listens
I finally had my appt in Birmingham. My fear of yet another doc that either doesn't know what he's doing or doesn't have time to listen to me was not the case at all. He spent 35 min. talking with me. Scary thing is after looking at my records/biopsy's/etc. he does not feel I have LC. He is testing me for Masteocytosis. WOW! That's some scary stuff. He is not entirely ruling out LC so he started me on the highest dose of Welchol for the next two weeks. If I see improvement...great. If not he also wrote me a prescription for Entocort to switch over to after the two week trial. I know many on here have had great success with Entocort. Time will tell what my body does. Really hoping for a big fat NEGATIVE on the Masteocytosis. Will post more later. Still trying to get my house cleaned up from all the construction.
-Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain-
Kim
Kim
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wonderwoman
- Rockhopper Penguin
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- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Kim, I'm happy to hear you saw a doctor you felt listened to you. I just read about Mastocytosis on this forum. Check it out in the July 28th post titled Childhood Symptoms. Also watch the videos that are on the web site www.tmsforacure.org
I really know nothing about this disease but I'm sure you will hear from others here that do know about it. Good Luck.
I really know nothing about this disease but I'm sure you will hear from others here that do know about it. Good Luck.
Hi Zizzle,
Your symtoms sound a little suspicious for a mast cell problem. A few of us on this site have discovered mast cell issues. Exercise intolerance, bruising, dermatographism, and low BP are all symptoms, as well as GI complaints. You may want to request a tryptase stain for mast cells on your next colonoscopy. You could go to www.tmsforacure.org for some info to read about some of the symptoms. Don't get alarmed about the systemic mastocytosis info - that's quite rare, but it's now being discovered that many people probably have a different version that isn't well understood. Getting my GI tract in better working order has done wonders to calm down my mast cells and alleviate the other symptoms.
Mary Beth
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
Hi Kim,
The only way to test for systemic mastocytosis is to do a bone marrow biopsy. Your doctor is most likely checking some labs, like tryptase. If tryptase and other labs are normal they probably won't follow up with a bone marrow biopsy. Did they find excess mast cells on a bowel biopsy? What other symptoms of masto do you have?
Mary Beth
The only way to test for systemic mastocytosis is to do a bone marrow biopsy. Your doctor is most likely checking some labs, like tryptase. If tryptase and other labs are normal they probably won't follow up with a bone marrow biopsy. Did they find excess mast cells on a bowel biopsy? What other symptoms of masto do you have?
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Kim,
I hate to be a wet blanket, but I am already suspicious of your new doctor. First off, a diagnosis of LC is not an arbitrary decision. It is based on unique markers, and there is no way that a reasonably-competent pathologist is likely to confuse them with the markers of mastocytosis. IOW, if you were diagnosed with LC, there is virtually no chance that you do not have LC. That doesn't mean that you cannot have mastocytosis, in addition to LC, but even if you should have it, there is no reason why that would rule out a previous LC diagnosis. An LC diagnosis is forever. Even after your symptoms are in remission, and your histology has returned to normal, you still have the disease, it is just inactive.
I'm guessing that he read an article on mastocytosis, looked at your data, and thought, "WOW! Here's my first case, already!
If he thinks that you have mastocytosis, why on earth would he prescribe a bile acid sequestrant. That's a treatment for IBS, or for someone who has had their gallbladder removed.
Mastocytosis can easily be misdiagnosed, because it typically occurs secondary to another condition. For example, mast cells are likely to be increased when the intestines are inflamed, by an IBD, but the count will return to normal, when the IBD symptoms are controlled.
Unless you have some sort of obvious signs, (such as pigmentation spots on your skin), I don't understand why he would come up with such an unusual opinion, on your very first visit. Of course, there's always the possibility that he really, really knows his stuff. We'll see, I suppose. Please keep us posted.
Tex
I hate to be a wet blanket, but I am already suspicious of your new doctor. First off, a diagnosis of LC is not an arbitrary decision. It is based on unique markers, and there is no way that a reasonably-competent pathologist is likely to confuse them with the markers of mastocytosis. IOW, if you were diagnosed with LC, there is virtually no chance that you do not have LC. That doesn't mean that you cannot have mastocytosis, in addition to LC, but even if you should have it, there is no reason why that would rule out a previous LC diagnosis. An LC diagnosis is forever. Even after your symptoms are in remission, and your histology has returned to normal, you still have the disease, it is just inactive.
I'm guessing that he read an article on mastocytosis, looked at your data, and thought, "WOW! Here's my first case, already!
If he thinks that you have mastocytosis, why on earth would he prescribe a bile acid sequestrant.
That's a treatment for IBS, or for someone who has had their gallbladder removed.Mastocytosis can easily be misdiagnosed, because it typically occurs secondary to another condition. For example, mast cells are likely to be increased when the intestines are inflamed, by an IBD, but the count will return to normal, when the IBD symptoms are controlled.
Unless you have some sort of obvious signs, (such as pigmentation spots on your skin), I don't understand why he would come up with such an unusual opinion, on your very first visit. Of course, there's always the possibility that he really, really knows his stuff. We'll see, I suppose. Please keep us posted.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.