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Welcome! >> Introduce Yourself/Share Your Story >> Newbie http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1299240717 Message started by Shawna on 03/04/11 at 00:11:57 |
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Title: Newbie Post by Shawna on 03/04/11 at 00:11:57 Hello everyone. I am finally diagnosed with TMEP...I use finally cus it took 3 years. I found out after a skin biospy and blood work. Evidently the Hematologist is not alarmed yet cus my tryptase levels are not high enough to be systematic. I have the ugly red/brown rash on legs and its growing upward in not so wonderful places and I'm worried it might go to face. I have been hypothroid for about 14 years and had gasto "issues" for many years. I break out with terrible rash when I get hot or exposed to sun. I have tried the allegra but It have me terrible headaches. Zrytec dries me out too bad.Started Doxepin last night and this mornign feeling TOTALLY GROGGIE AND INCOHERENT.....so take that off list of meds i don't like. I am being treated at Walter Reed and they are suppose to start some lazer therapy on me in a couple weeks to help with the "spots"...they act like its just something ya live with and take pills and life will be "all good"..mentally exhausted with this whole deal... Not sure is this condition is hereditary but my son has major stomache pain issues and now they think he has Chron's or Ulcerative colotis. Will know after is 2nd upper/lower scope in a year next week and he is only 11. Any advice or info for me and my son is helpful...Thanks everyone. |
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Title: Re: Newbie Post by Riverwn on 03/04/11 at 02:21:40 Hi Shawna and CONGRATS for getting a diagnosis!! I am so happy that you joined us and Im THRILLED that they are finding little else (so far) with your tests. If you play it careful and smart, you dont have to get any worse Hon... I pray for a great quality of life for you once you get these GI symptoms under control! There are so many different meds H1 and H2 blockers that you can choose from until you find the one you respond to the best.. Yes, some are drying,.. but you will grow out of that, it will pass.. I might suggest either Singular or Vistaril.. those are the 2, I see people saying they love the most--the best results for them. Doxepin isnt good for people who have low Seritonin levels.. I tried it too, didnt help. I would REALLY like to see you try Zantac 300 mg twice a day--it is such a help to most of us. Talk to your doctor , keep working on your battle plan and keep a positive outlook..Once your meds are "tweaked" right for you, life will get so much better :) Hugs!! Ramona |
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Title: Re: Newbie Post by Shawna on 03/04/11 at 03:01:59 Thanksriverm for the info. I am currently taking prilosec for stomache and had stopped the singulair with the zyrtec because of such dry eye problems. I fell asleep for 2 hours this morning because of the doxepin..yikes and I dont' really wanna go down the antidepressant route. I had taken celexa for about 10 years because of my Chronic Fatique syndrome. Funny how all these years later they say that CFS is real now. I am worried about getting so bad I will end up like my mother who has Fibro so bad that a lot of days she can't function and or get outta bed. My sister has it too. I did a sleep study years ago and they said I had Restless leg syndrome. docs werent sure if it was really the problem cus celexa might have been the culprit. Either way I changed to the new med yesterday to get a good nights rest, but at this rate I will never have a life if I'm drugged up feeling or napping at 7 in the am. I got things to do kids to raise. Thankgoodness I just got layed off. I can get this condition under control. |
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Title: Re: Newbie Post by missybean on 03/04/11 at 05:08:39 Hi Shawna, glad you joined the forum. I was just diagnosed with TMEP as well last Tuesday. It's been a 3 year journey for me as well, which I consider too long but I guess the average time it takes someone with masto to get diagnosed is 9 years! I understand your fears about the future with CFS, and mastocytosis. I was diagnosed with Fibro a year ago after going to the doctor for a couple of years with problems. You will notice many people of this site that were diagnosed with either CFS or Fibro before masto. Many of us wonder is there some kind of connection or were some of us misdiagnosed? You will probably have a better idea when you get on the right combination of meds that's right for you. If your symptoms of CFS disappear when you take your masto meds then you might start to question that diagnoses. Only you will know. A lot of people with CFS and Fibromyalgia find relieve of their symptoms with some diet adjudgements like eating no sugar....none, even little fruit. For me this diet gives me like an 80% improvement in symptoms. My mother in law has fibro and at times could barely get out of bed, I noticed that when ever she ate bread products her symptoms got worse, I had been hounding her for years just to try to go gluten free, she has now and she said it is like night and day for her. So I know doctors will tell you diet doesn't play a part in fibro and CFS and I would beg to differ. Finding the right combination of meds will take a little time so don't get to discouraged. I'm still trying to figure out mine. Ramona is right 300mg zantac twice daily seems to help a lot of us. I hate taking all these meds too, but for me upping my zantac to 300mg twice daily made a big difference in how much I flushed and how itchy I was. I too have children and understand that being that drowsy is unacceptable. I took doxipen for about 2 weeks and yes it made me feel like a zombie. I take hydroxyzine 50mg at it helps me sleep without the frequent waking I have experienced for years, so feel like I get solid sleep....yet I'm not a zombie and I still wake up when my 12 month old baby wakes up in the middle of the night. I just started cromoyln and I already am seeing a difference. I still have a lot to learn but there is a ton of really knowledge people on this site that can help if you need it. I think the biggest part of managing masto is figuring out your triggers, for most of us it's food. Do you know what your triggers are? It's nice to meet someone else with TMEP. Where do live? I'm in washington state. Melissa |
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Title: Re: Newbie Post by Shawna on 03/04/11 at 05:46:29 I live in D.C area and I see Military Doctors. Interesting info about the bread and sugars. I am a chocoholic have to have 1 piece of something a day. They tested me for celiac and it was negative but maybe I should try the no gluten thing. Now, I have heard several people mention cromyln. Can you tell me more.? |
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Title: Re: Newbie Post by missybean on 03/04/11 at 06:37:54 Shawna you are lucky that you are in DC, your pretty close to some of the masto expert doctors. Cromoyln sodium is a mast cell stabilizer. So from what I understand it blocks mast cells from releasing those contents that causes those annoying masto symptoms. Someone else might be able to explain it better than me. But I noticed a difference in my breathing, which was weird because I didn't know my breathing was even being affected. I heard Singular helps a lot of people, thats the next med I will try. What kind of symptoms do you have with the masto? Melissa |
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Title: Re: Newbie Post by starfish on 03/04/11 at 08:01:45 Hellooooo TMEPers!!!! I have had TMEP since 01. I can say it pretty much has spread everywhere....started on the top inner thigh, but it is not on my face. My masto is systemic and my tryptase runs anywhere from 188 to 135. I can say with my skin symptoms, as I refer to as "melting skin" was greatly helped with the Gastrocrom. I live in Ohio. I see Dr. Akin once a year. |
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Title: Re: Newbie Post by Joan on 03/04/11 at 09:32:04 HI Shawna, and welcome to the forum, There is hereditary form of mastocytosis, and researchers are also studying mast cell dysfunction in fibromyalgia patients. They now feel there's a connection. Many people with mast cell disorders have digestive problems, and it's known that mast cells can be the culprit. When your son has his testing, you might ask them to test for mast cells,too, and, if they find he has too many in his digestive system, to do a morphology on them. Gastrocrom is the treatment of choice for that problem. 6-8 weeks of gastrocrom might give a long term positive result, or treatment may need to be ongoing. I've also had a lot of luck using probiotics. My favorite at the moment is "Align," which is available over the counter at pharmacies. If you haven't already, you might want to try a low histamine diet for both of you. (www.urticaria.thunderworksinc.com/pages/lowhistamine.htm) You do have to be strict on it, because eating just one high histamine food or a food that triggers direct histamine release can send you back to square one. Regarding doxepin, I took it in the beginning just to get some relief from the symptoms. However, I only took 10 mg. and only in the evening before bed. It helped my sleep, and I felt rested in the morning. Of course, we're all different and that may not be the best med for you. |
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Title: Re: Newbie Post by Shawna on 03/04/11 at 15:36:28 Starfish have you tried the lazer treatment or blue light treatment to get rid of red/brown spots? We will be moving to Georgia next year and I can't wear long sleeve shirts and jeans when it 100degrees outside.I sometimes panic of the thought of living in a hot area. I can't really take the kids swimming like I used to because of rash that comes on with sunlight and or getting hot. Joan thanks for the info. I will try and explain to pediatric gastro doctor what I have so that he can check my sons mast cells.I will hate it if i found out my son inherited his sons issues from me. They this he has either Chrons or Ulcertive colotis. Melissa I have the brown/red spots which for over a year I thought was age spots.(I'm only 41) and that was 3 years ago. I have had CFS for years. Slow digestion/acid reflux. Which until the last month did I learn from this sight that they are all related. I have had more and more seasonal allergies I thought until it started happening all year round. Weird how all this is connected yet there are no websites out there for information on TMEP. |
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Title: Re: Newbie Post by missybean on 03/04/11 at 16:28:33 Shawna, I'm not sure how your sons digestion is or if he has a lot of pain and/or many foods he can't eat but there is a book out there called ''Breaking the Vicous Cycle, The Specific Carbohyrate Diet". It is a book for people with bowel disorders. I have it and I'm actually reading it again. It's very interesting and makes a lot of science, the woman who wrote did a lot of research on this stuff. You can read the reviews on amazon, some people say it changed there lives dramically. I will include the links. Yes, there is very little info on TMEP. Please share any info you find as I will do the same. My doctor talked to me about the laser treatment, the price has really come down. I have spots on my arms in several places that look like age spots too, they are very faint, I also have some on my legs that rarely get any sun which I also thought was wierd and then I just started getting ones that look like moles/freckles mostly on my arms/chest and back and it was in a really short period of time, like with 2 weeks I had 30 new spots and I thought.....a person doesn't get 30 new moles that quick and it's in the middle of winter. The spots on my chest are red and bigger. They are like the size of a pea or a little bigger. Anyways thanks for sharing. http://www.breakingtheviciouscycle.info/ http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/product-reviews/0969276818/ref=sr_1_1_cm_cr_acr_txt?ie=UTF8&showViewpoints=1 Melissa |
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Title: Re: Newbie Post by Josie on 03/05/11 at 01:19:51 Hi Mel and Shawna I had a magazine from the anaphylaxis campaign in the UK with an article on a lady with temp . Ill go on the site and see if I can find any links to information for you :-) It is a trusted website for me :-) hugs Josie |
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Title: Re: Newbie Post by missybean on 03/05/11 at 03:41:58 Thanks Josie! Melissa |
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Title: Re: Newbie Post by Riverwn on 03/05/11 at 04:24:38 Shawna, you are SOOOO lucky to be right where you are right now! You are living next to the Masto experts of the world--and there arent many!! PLEASE see about contacting someone with NIH and letting them work you up to see what a good regime would be for you. They are the BEST. Either that/or go to Boston, Dr Castells, Dr Akin... before you move. Once they have seen you, you will always be considered their patient and the local doctor in Georgia (after you move) can call them for help with any problem you have. Good luck Hon ! Ramona |
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Title: Re: Newbie Post by starfish on 03/05/11 at 04:44:06 Shawna, from what I understand all the "treatments" wouldn't be permanent, but I can say...when I go to the tanning booth, (which is rare), it does seem to make the "spots" better...but I don't know if that is because of the tanned skin, they show less??? But I will say, my skin feels better after I have tanned. (in a booth-and I'm talking like 6-7 mins. max) I cannot be in the sun....I live in the air conditioning. I become very ill if I am in direct sunlight. Let's just say I wear a lot of capris. |
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Title: Re: Newbie Post by missybean on 03/05/11 at 06:26:04 Thanks Starfish! I have been considering doing a little tanning to see if it helps. I'm pretty fair so I can't go that long. A couple of years ago I went to Florida and got a nice tan and oh I felt so good! Must have been all that Vitamin D. I take 5000 iu's a day and still can't seem to get my levels above 40. I think I have a problem absorbing fat soluble vitamins. Anyways during the summer I usually feel better except when I get too much sun then I feel sick for like 24 hours. Melissa |
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Title: Re: Newbie Post by starfish on 03/05/11 at 10:13:20 I am also vitamin D deficient. The MD has me taking 50,000 IU a week. That makes me just on the line. It helped me to feel better though. :) |
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Title: Re: Newbie Post by missybean on 03/05/11 at 15:59:27 Wow starfish! Did your doctor give you any explaination as to why even taking that high of a dose your levels are still on the low end? The highest mine got was 62 and I felt pretty good, that was with tanning and a trip to Florida. Melissa |
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Title: Re: Newbie Post by Joan on 03/05/11 at 18:27:41 Has anybody tried bromelain? It helps break down fat and protein. Wonder if it would help with Vitamin D absorption? Mine was low, too, and the doctor told me to take 5,000/day. I've been worried about taking that much, so maybe I should have another test? I was afraid to tan because it might be too hot. Is it hot when you tan? |
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Title: Re: Newbie Post by missybean on 03/06/11 at 03:34:13 It's not to bad tanning, if there is a fan in the room you can put on you. But I find I have to keep it around 5 to 7 minutes to not be itchy afterwords. Joan, I have been told up to 10,000 iu's is perfectly safe. When I'm sick I will take more. Watch this video, it's pretty cool. http://www.youtube.com/watch?v=qeg-5NDyJ84 |
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Title: Re: Newbie Post by Josie on 03/06/11 at 04:02:06 Hi Joan , mel and everyone :-) My understanding of vitamin D is that is should be supplemented alongside calcium for optimum absorbtion and activity . The actual measurement of vitamin d levels is very difficult as it is stored in fat . Also because it is fat soluable it is possible to overdose . as unlike water soluable vitamins you don't pee out what you dont need . The range for optimum working is relatively narrow . So both low and high levels have concerning problems attached . The normal limits are :- 25- hyrdoxl - 37-200 nmol /l ( 0.15 - 0.45 ng/l ) ( skin genrated vitamin D ) 1,25 - dihyroxy - 60-108npmol /l ( 0.24 - 0.45 pg/l ) ( skin generated vitamin D coverted in the kidneys ) 24,25-(OH)2D3 - is a less active metabolite produced if vitamin d supplies are inadequate . Regulation is by parathyroid hormone , phosphate levels and feedback inhibition by 1, 25. This is logical . because if you ahve enough from these sources then you don't need the other :-) In assesing vitamin d level , the units should be taken notice of :-) Calcium needs vitamin D to be absorbed . 99 % of calcium is in the skeleton . When clacium levels drop , parathyroid hormone increases . This gives several actions to preserve calcium and increase absorbtion . Low levels , leads to osteomalacia in adults ( rickets in children ) . RDA's for the US :- A new Dietary Reference Intake was made for vitamin D[33] on November 30, 2010 by the Institute of Medicine. The previous recommendation was an Adequate Intake (AI). The reference intake is based on more evidence than the previous AI. The recommendations were formed assuming the individual has little to no sun exposure. The reference intake includes intake from diet (food and beverages) and supplements. The new reference intakes for vitamin D are: * 170 years of age: 600 IU/day (200 IU is 5 μg equivalent) * 71+ years of age: 800 IU/day * Pregnant/lactating: 600 IU/day An AI remains for infants: * 012 months: 400 IU/day The upper level intakes for vitamin D are: * 06 months of age: 1,000 IU * 612 months of age: 1,500 IU * 13 years of age: 2,500 IU * 48 years of age: 3,000 IU * 9-71+ years of age: 4,000 IU * Pregnant/lactating: 4,000 IU[3 Dietry vitamin d is the same as skin produced vitamin d :-) . Interestingly it is uvb activity not direct sun exposure which allows production through the skin . So UVB on a cloudy day or in the shade allows vitamin d production . Even through non UV protective clothing . Only 5 minutes of direct sun exposure is suffucent to stimulate production of vitamin D . Also sun cream allows enough UVB through for vitamin d production .( factor 20 and below ) So you can protect youreslf from sun exposure problems , both masto and skin cancer and continue to produce enough vitamin d . If complete UV protection is needed dietry vitamin d is as useful as skin :-) Milk and diary products are whole foods . Bar vitamin c and fibre . Other sources include :- Supplemented cereals , breads and margarines . My olive oil margarine is supplemented :-) A whole egg provides 20 IU if egg weighs 60 g (0.33 IU/g) Beef liver, cooked, 100 g (3.5 oz), provides 15 IU (0.15 IU/g) # Fish liver oils, such as cod liver oil, 1 Tbs. (15 ml) provides 1360 IU (90.6 IU/ml) ????????????????????????????? Ok ??? Joan ????? UV-irradiated mushrooms and UV-irradiated yeast are the only vegan sources of vitamin D from food stuffs.[4][36] A 100g portion provides: (regular) 14 IU (0.14 IU/g), (exposed to UV) 500 IU (5 IU/g) Both yeast and mushroom materials, when irradiated with UV, produce vitamin D2, but it is not known whether the D2 is biologically fully equivalent to the D3 vitamin in humans. The supplent of choice in the UK for bone protection and achieving absorbtion is :- This is what BNF - the british national formulary which is the doctors prescribing bible here in the Uk . It is updated every 6 months . has to say about vitamin d replacemnet 9.6.4 Vitamin D Note The term Vitamin D is used for a range of compounds which possess the property of preventing or curing rickets. They include ergocalciferol (calciferol, vitamin D2), colecalciferol (vitamin D3), dihydrotachysterol, alfacalcidol (1α-hydroxycholecalciferol), and calcitriol (1,25-dihydroxycholecalciferol). Simple vitamin D deficiency can be prevented by taking an oral supplement of only 10 micrograms (400 units) of ergocalciferol (calciferol, vitamin D2) or colecalciferol (vitamin D3) daily. Vitamin D deficiency can occur in people whose exposure to sunlight is limited and in those whose diet is deficient in vitamin D. In these individuals, ergocalciferol or colecalciferol in a dose of 20 micrograms (800 units) daily by mouth may be given to treat vitamin D deficiency; higher doses may be necessary for severe deficiency. Patients who do not respond should be referred to a specialist. Preparations containing calcium with colecalciferol are available for the management of combined calcium and vitamin D deficiency, or for those at high risk of deficiency (see also Osteoporosis and Calcium Supplements). Vitamin D deficiency caused by intestinal malabsorption or chronic liver disease usually requires vitamin D in pharmacological doses, such as ergocalciferol tablets up to 1 mg (40 000 units) daily; the hypocalcaemia of hypoparathyroidism often requires doses of up to 2.5 mg (100 000 units) daily in order to achieve normocalcaemia. Vitamin D requires hydroxylation by the kidney to its active form, therefore the hydroxylated derivatives alfacalcidol or calcitriol should be prescribed if patients with severe renal impairment require vitamin D therapy. Calcitriol is also licensed for the management of postmenopausal osteoporosis. Paricalcitol, a synthetic vitamin D analogue, is licensed for the prevention and treatment of secondary hyperparathyroidism associated with chronic renal failure (section 9.5.1.2). Important. All patients receiving pharmacological doses of vitamin D should have their plasma-calcium concentration checked at intervals (initially once or twice weekly) and whenever nausea or vomiting occur. Symptoms of vitamin d overdose :- Side-effects symptoms of overdosage include anorexia, lassitude, nausea and vomiting, diarrhoea, constipation, weight loss, polyuria, sweating, headache, thirst, vertigo, and raised concentrations of calcium and phosphate in plasma and urine ( BNf 2011 ) Low magnesium can accompany low calcium and should be treated alongside low calcium . ( BNF 2011) Normal values for calcium are :- 2.20 - 2.67 mmol/l ( 8.5 -10.5 mg/dl ). Again both low and high levels can cause trouble . ( Kumar and clarke clinical medicine 6th ed , 2008 ) I hope this clarifies things . Hugs Josie xxxxxxxxxxxxxxxxxxxxxxxxx |
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Title: Re: Newbie Post by starfish on 03/06/11 at 05:33:20 Missybean-in '09 I was at 15 and after taking the D since then it is 32. He wanted to continue on that for a while and check again. It definately helped me to feel much better! |
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Title: Re: Newbie Post by Joan on 03/06/11 at 06:08:03 Josie, I'm not a medical person, so comprehension can be spotty at times, but thank you for clarifying a lot. I've read articles that say D2 is as good as D3 and articles that say it isn't. However, I haven't found anything that would indicate whether it is as good in people who have problems digesting/absorbing foods, as many of us do at times. Everything I've read today does say to try one of them and then have levels checked a few weeks later to make sure it's working. |
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Title: Re: Newbie Post by missybean on 03/06/11 at 07:12:21 Josie, thanks for the info. I have to say though I don't agree with RDA of Vitamin D. I really wonder if the reason why I don't absorb vitamin D is because I'm low in magnesuim and/or I have some kind intestinal problems absorbing it. I frequently have steatorrhea ( which I have been told is a sign of my body not absorbing fats ). Melissa |
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Title: Re: Newbie Post by Josie on 03/06/11 at 10:32:20 Hi Mel , Streatorhhea is also a sign of a gall bladder problem :-) I understand , they are the most up to date guidelines I could find . I would say that a balance is important . so I would take calcium levels as a guide of adequate vitamin D intake . Please just bear in mind high levels are as concerning as low of both vitamin D and calcium ( wikipedia - Vitamin D ) and it can cause overdose as the body will store whatever you take over your recommended daily amount Magnesium levels need to be stable as low levels affect potassium levels and both can cause heart irregularities . if your magnesium is consistantly low a EKG ( heart trace ) would be wise . It is also involoved in asthma. It is used as a treatment IV in asthma not responding to nebulisers . cealics and other bowel conditions can give problems with absorbtion . I would take calcium levels as my sign of inadequate or adequate intake :-) much love Josie :-) |
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Title: Re: Newbie Post by missybean on 03/06/11 at 13:25:37 Josie good info! So, I should probably ask for a magnesuim level huh? FUnny you should mention, gall bladder. I had gall bladder pain as a teenager and then finally at 19 the gall bladder attacks were so bad, my mom made me go to the doctor and I had all kinds of test. Ultrasound relieved no stones and I had some kind of other test where they injected some radioactive dye and this big circle thing came down over me and it watched the dye go through my liver and gall bladder. They told me I had a small restriction in the flow of bile and if the pain continues see a surgeon. I followed a low fat diet and the pain went away. I have gall bladder pain really bad maybe twice a year now. After the birth of my secound daughter, it started bothering me again and I was having steatorrhea really bad I saw a new GI doc, he told me to take fiber and sent me on my way. I fired him and went to another doc. I never got an answer but I called a naturopath I used to see and she told me to take digestive enzymes with ox bile in them. I think it helped, but by then things had calmed down. Melissa |
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Title: Re: Newbie Post by Shawna on 03/07/11 at 22:37:37 Sorry it took me so long to thank everyone for there help. I have been so very ill and had to go to ER. I had fever and chills and diarhea and went to ER and of course I told them I had TMEP and they said WHAT? and I said Mast cell disorder and they looked at me like I was making up a disease. THey gave me 3 bags of fluid and sent me on my way. I didnt even feel better but they couldnt find anything wrong so they guessed it was a virus. So here I am 4 days later and feeling a little better but still stomache issues........and I haven't eaten but a little rice last night. Ramona how can I find out more info on the specialty docs in my area? What is the NIH? I will be checking out the book missy suggested soon. |
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Title: Re: Newbie Post by missybean on 03/08/11 at 04:11:49 Shawna, I sorry you have been sick. Hope your getting better. Hugs! Melissa |
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Title: Re: Newbie Post by Josie on 03/08/11 at 06:23:55 Hi Shawna , many hugs xxxxxxxxxxxx We have all been there . Try and hold what information you can :-) I have had stroppy nursing sister annoyed she had to have me stay because i had no epi pens at home ( a bad run ) . In the mean time say you have a form of mastocyctosis and direct them to the videos on you tube :-) Im in the UK so ill leave the doc stuff to one of the others . The fluids will have helped replace what had shifted :-) What antihistamines and other meds are you on ? Do you struggle with any foods or medications ?? what happens ??? Sorry about all the questions :-) . I dont know what you know about temp ?? The way to see it is that it is putting chemicals into your system which are giving you symptoms . So blocking / manging those chemicals is the way to control symptoms and looking for your triggers is the way to reduce the amount of chemical sent into your blood . As a guide :- from mast cells ( TEMP ) Histamine - flushing , diarrhoea , vomiting , bowel and tummy spams , swelling ( loss of fluid ) in any area with a menbrane :- mouth , nose , throat , stomach , bowel , anus , rectum , lady bits , lungs . hives on the skin . Fluid loss leading to dizzy , light headed , fast heart , blood pressure down ( or up ) prostoglandins - flushing , spasma You inborn immunity - compliment - activates mast cells by its own route . Also :- blood vessels porus = swelling , fluid loss , and smooth muscule contractions . I know this seems so scary and dauting to read . But knowing why you are feeling yucky will help you :-) It is always important to remeber other things that can give mast cell symptoms :- food poisioning , virus's , bacteria . Docs will dib for virus if they can't find the cause . There is a really good emergency protocol on the mastocyctosis website . which you can give them . It will help them settle down the mast cells , hitamine and other things whilst they look for a trigger :-) sometimes its obvious . Others you wont know . But all that matters is being well . many of us find virus' or infections will trigger us so the docs are kind of right . You may have a more - all body form of mastocytosis , BUT it could also be that you are not on a good ix of meds to control the mast cells and the chemicals and when you get on the right mix of meds you will be much better and not being subjected to so many histamine effects . You have rare form of a rare condition , so you are kind of rare squared xxxxxxxxxxxxxxxx BUT , as long as you can direct the docs then its ok . With something rare , you have to think about docs a little differently . what will amke them a useful doctor for you will be if they are willing to learn and in the immediate treat you as a mast cell patient . apart from my specalist specialist . I have to allow all doctors to get up to speed . even my ED consultant uses the vids on you tube xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx For very poorly times , you need to carry that info with you :-) I hope your tummy settles many hugs Josie |
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Title: Re: Newbie Post by Riverwn on 03/10/11 at 20:08:39 Hi Shawna, Im sorry its taken me this long to answer you, I was a bit under for the last 2 days (My own fault, I had a wonderful 6 good days in a row and I over did it LOL). ok I dont know where you live but there is a thread here on Drs.. look under that first. You will need to get your primary Dr to write a letter for you stating you are under his care for this, what it is (abridged version) and what to do for you in case of emergency. Later on I want you to look in the Emergency thread here and start putting together a notebook for you to grab in an emergency. It has helped me so much!! I hope youre feeling better soon Hugs Ramona |
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