FAQ - mastocytosis, systemic
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Please please tell me everything you know about systemic mastocytosis.?

A friend of mine was just told she has systemic mastocytosis. What can you tell me about this disease? Do you know anyone who has it?

Systemic mastocytosis is caused when mast cells collect in the tissues and can affect organs such as the liver , spleen , lymph nodes , and bone marrow.

Mastocytosis is a disease characterized by the presence of too many mast cells in various organs and tissues.


The body has a variety of free-roaming cell populations that function as immunogenic agents. Most immunogenic cells fall into the category of white blood cells, but some remain in tissues and are not found in the blood. Mast cells are such a group.
The cause of mastocytosis is unknown. People with systemic mastocytosis have bone and joint pain. Peptic ulcers are frequent because of the increased stomach acid stimulated by histamine. Many patients with systemic mastocytosis also develop urticaria pigmentosa. These skin lesions itch when stroked and may become fluid-filled.
Systemic mastocytosis is only symptomatically treated. There is no known treatment that decreases the number of mast cells within tissue.  (+ info)

Survival Rate of patients with systemic Mastocytosis?

someone with this disease, mainly seen on the skin, however showed up in a bone marrow biopsy,......also had gull bladder removed, not sure if it was due to her recent childbirth,....or the disease,......being treated with chemo pills, at this time,....what is the survial rate, and how much "time' would this person have left in life?

Many people with systemic mastocytosis live long lives. did this person get it as a child or in adulthood? the odds are much better in children. Mastocytosis is not cancer by any means, although systemic masto is linked to lymphoma and leukemia. This person should be seeing a mastpcytosis specialist. there are several in the country. I know of one in Boston if you need contact info.  (+ info)

Systemic Mastocytosis: Mortal or life-threatening?

Hi there. Mi doctor believe that I have Mastocytosis, and Mastocytosis in an adult like me could mean: Systemic Mastocytosis. A lot of tests will have to be done to confirm the diagnosis but now I scared to dead: I surfed the web and in some webs they says that Systemic Mastocytosis is a mortal illness but in some others they says that systemic Mastocytosis have no cure but is a life-threatening condition. What is the true?

Thank you,
Well. Doctor believes I have mastocytosis, he believes that my arms rash is mastocytosis. A skin biopsy was made and today they will give me the results. What scare me is that my hematology exams have never been normal: Since I was child I have leucopeny and hight-ferritine. A lot of exams have been made Through my life and nothing bad have been found (even in three bone marrow biopsies). I have lived 30 years of a normal life and no serious illness although my hematology condition, but today if a doctor says me that I have mastocytosis, maybe it could mean the beginning of the end for me.

Sorry to hear that this may be the case. I'm curious as to what signs you presented with that led your doctors to this diagnosis. Bottom line is that a bone marrow biopsy will need to be done (don't be afraid of this, it isn't that bad/painful) unless the disease is limited to the skin. Buuut you're saying it's possibly systemic so the bottom line is:
1.The disease is too rare to know a prognosis for sure but,
2.The prognosis is variable and depends on your age, degree of symptoms and spread of disease.
3.Unfortunately the median survival time is probably 2-6 yrs, but there isn't too much data.
Hope this helps and best of luck.

Edit:I know it's a difficult thing to do but try to relax until a definitive diagnosis is established. A bone marrow biopsy (or biopsy of other suspected organs) will need to be done before any plan can be decided. I don't think even the best dermatologist can diagnose mastocytosis just from looking at a rash, IMO. Again, good luck mate.  (+ info)

Severe Stomach Pain & Systemic Mastocytosis??

Hi there... I've been diagnosed with systemic mastocytosis. I've had it under control for about 3 years now, but suddenly have had a huge flare-up that no one can explain.

I've been sick since the first of the year with severe nausea, stomach pain and vertigo. While changing up my antihistimines has helped, I can't seem to get rid of the stomach pain, and am still experiencing some nausea!

I'm taking 40 mg of Pepcid daily and I'm still suffering. Seems to happen anytime I eat, so I've pretty much stopped eating (I know, not good -- but what would YOU do if you were in agony every time you ate?).

I know it's not an ulcer -- we've checked that. I know mastocytosis can cause stomach pains like this, but the Pepcid has always fixed it in the past.

Does anyone else have mastocytosis? Any ideas for me?? I'm leaving for my honeymoon in 4 days and I REALLY don't want to be sick the whole time!!!

Thank you for your help!

There is currently no cure for mastocytosis. However, there are a number of medicines to help treat the symptoms of mastocytosis:

Antihistamines block receptors targeted by histamine released from mast cells. Both H1 and H2 blockers may be helpful.
Leukotriene antagonists block receptors targeted by leukotrienes released from mast cells.
Mast cell stabilizers help prevent mast cells from releasing their chemical contents. Cromolyn Sodium Oral Solution (Gastrocrom® / Cromoglicate) is the only medicine specifically approved by the U.S. FDA for the treatment of mastocytosis. Ketotifen is available in Canada and Europe, but is only available in the U.S. as ophthamic drops (Zaditor®).
Proton pump inhibitors help reduce production of gastric acid, which is often increased in patients with mastocytosis. Excess gastric acid can harm the stomach, esophagus, and small intestine.
Epinephrine constricts blood vessels and opens airways to maintain adequate circulation and ventilation when excessive mast cell degranulation has caused anaphylaxis.
Albuterol and other beta-2 agonists open airways that can constrict in the presence of histamine.
Corticosteroids can be used topically, inhaled, or systemically to reduce inflammation associated with mastocytosis.
Immunotherapy (Allergy Shots) may rarely be beneficial to select patients with mastocytosis. The benefits of the shots should be weighed against the substantially increased risk of severe and potentially fatal anaphylaxis triggered by the shots themselves.
Antidepressants are an important and often overlooked tool in the treatment of mastocytosis. The stress and physical discomfort of any chronic disease may increase the likelihood of a patient developing depression. Depression and other neurological symptoms have been noted in mastocytosis (see Rogers et al.). Some antidepressants such as doxepin are themselves potent antihistamines and can help relieve physical as well as cognitive symptoms.
In rare cases in which mastocytosis is cancerous or associated with a blood disorder, the patient may have to use steroids and/or chemotherapy. The novel agent imatinib (Glivec® or Gleevec®) has been found to be effective in certain types of mastocytosis (Droogendijk et al.).

There are clinical trials currently underway testing stem cell transplants as a form of treatment.

There are support groups for persons suffering from mastocytosis. Involvement can be emotionally therapeutic for some patients.  (+ info)

Yes are there any cures for mast cell disease ? also know as Mastocytosis,systemic mastocytosis,SMCD?

My doctor says that in five years they can remove these mast cells with lasers, has it been done ?.. I THINK IT HAS IN MICE ? It would really improve my quality of living, it also could improve my dermatograpism & or Cfids. and or fibromyalgia, I heard my disorder is so rare only 2 people in every 33,000 have it ,any feed back would be greatly appreciated and respected..thank you

I was diagnosed with Systemic Mastocytosis 7 years ago. There are treatments to help with symptoms but there is no cure. Laser treatment can reduce skin lesions but it is not permanent and not a cure.  (+ info)

Anyone in Australia and have Mastocytosis?

we have just moved to Australia and looking to get in touch with anyone with mastocytosis or systemic mastocytosis.

My son has systemic mastocytosis.

Hi, We've just moved to Melbourne. My daughter (18yrs) is currently undergoing testing for Mastocytosis.
There is a contact person in Western Australia, these are the contact details. Good luck!

Western Australia Patient Contact

Leonie O'Connor
Western Australia, Australia
[email protected]

Kind regards

Jenny Herd  (+ info)

How do I find information on mastocytosis in the UK?

Anyone know if there is a website with helpful information on Mastocytosis in the UK?

There is currently a worldwide group, largest collection of masto patients out there, through the Mastocytosis Society - www.tmsforacure.org

If the masto patient is a child, try www.mastokids.org  (+ info)

What are homeopathic remedies for systemic yeast infection?

I saw a program with a checklist for systemic yeast infection. I answered "yes" to nearly every question! I already know about yogurt and probiotics. What other things I should be incorporating?
This is NOT for specific treatment of a vaginal yeast infection, rather an overgrowth of fungus throughout the body. Instead of "homeopathic" maybe I should have specified "natural" remedies instead -- such as certain foods, vitamins, or supplements to use.
Thanks for all the suggestions so far!

This stuff. 98% kill of Candida Albicans. Triple blind placebo study completed in 1998 and found on Pubmed.org
Proof that Candida takes two forms and can become systemic.

http://video.google.com/videoplay?docid=-7727934020345992708&q=candida+albicans+video&total=22&start=0&num=10&so=0&type=search&plindex=3 What feeds candida and what starves candida.

What I did. http://www.glycoscience.org is real. Dr. Hudson Freeze used "Mannose" to help improve his genetic patients which is found in aloe and this company has as well. He was angered by the fact that one of his patients dropped out to take this complex from glycoscience web site and as a result, he has been on a campaign to put down the company that sells it because he wants to market glyconutrients. However, he has no patent and Oxford University has taken down his slamming article against the company that sells it, because he is proven wrong.

In the interum, there is a triple blind pacebo study conducted by Doris Lefkowitz PhD who approves of medical dictionaries and this study shows that glyconutrient complex has a 98% kill of Candida Albicans... The mannose alone, has a 45% kill.

Kalos, from your other answer tried to report me to Yahoo as a solicitation and once they saw my answer was helpful they restored my points and my answer.

If you ever see Kalos Orisates answers again, feel free to report him if he calls osteopaths and chiropractors who have earned their degrees and have healed countless people in a non toxic manner quacks.

This yahoo forum is to be of people of quality and its time for people to take charge and report those who slam natural healing to the extent that it is actually harming people, because side affects of OTC drugs is blindness and liver damage.

It is the body, with the proper nutritional tools that are missing in the modern diet that can cure itself. Once your cells recognize the fungus, it eliminates it on its own safely with no side affects from drugs.  (+ info)

What are systemic diseases that cause alveolar bone loss?

I have been slowly losing bone in my jaw over many years. I do not have gum disease. My dentists are perplexed. Despite getting my teeth cleaned 4X a year, they have not been able to control it. I do have a significant open bite, but x-rays do not show evidence of a traumatic occlusion. I have recently seen an endocrinologist to explore systemic causes of bone loss. I have so far ruled out sarcoidosis and osteoporosis. Are there any other diseases I should be screened for? I did find out that I was vitamin D deficient so am taking vitamin d supplements. There are no signs of inflammation on my gums. They are pink and firm.
No, I am not on fosamax. I had a dexascan and my numbers are fine. What type of autoimmune disease causes you to be allergic to your own teeth?

It could be wisdom teeth coming in combined with lack of calcium/vitamin D that could cause the jaw to recede which together cause teeth compression and bite disortions. A bite disortion will cause the teeth to bite down crocked causing jaw resession from the teeth as well as could cause loose teeth or even pockets of jaw bone to disappear around the teeth roots. I had this situation and I am trying hard to save two incisor teeth. 1000mg Vitamin D daily. 1000mg calcium daily. Exercise is most important for your body will only process food that the body demands from continued exercise. Stop drinking coffe or soda. No more candy/sugar. Drink Orange Juice in morning, milk in morning and night. Rinse/Brush after each meal, and before bed. Hydrate your body with water after exercise. Change the pillow case you sleep on at least each week. Might also change pillows for this could be a nightly source or irritation.
Shower before bedtime too.  (+ info)

What type of physician considers systemic issues?

What type of doctor treats systemic symptoms?

My issues include (but are not limited to) severe scalp eczema, kidney and bladder pressure, intestinal distress. I believe it may be candida or perhaps a food intolerance. I would like to see a doctor that would explore whether or not these issues are all connected.

I would also say an internist or an allergist, but there are things you can do before you see them to relieve some of your discomfort. Plantain(the herb not the banana like thing) and Slipprey Elm in a tea together (go to your local natural health store and they should have both) in an equal ratio of 2 parts (or cups) of water to 2 ounces of herb will help relieve your eczema nicely. Boil, then steep for 1/2 hour and use both externally(as a shampoo/hair treatment over a bowl...soak for 10 minutes) and internally (drink as you would any other tea). I have also found Garlic and Astragalus root extremely effective for urinary tract infections...take as labeled on the bottle.
However, definitely do go see a doctor for testing as you may also be diabetic...it doesn't happen often, but I have seen these symptoms in diabetic people all together.

I am at windstarhealing.webs.com if you have any other questions...good luck, and be well!  (+ info)

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