Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Hello...I'm Kristi http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301863839 Message started by Kristi on 04/03/11 at 09:50:39

Title: Hello...I'm Kristi
Post by Kristi on 04/03/11 at 09:50:39

Hello, my name is Kristi. I live in St. Louis, MO where I am desperately trying to get a diagnosis for worsening anaphylactic reactions to more new things every day. A little background on me: I'm 40 and have always had bad allergies to cats, mold, dust mites, pollen and have had a lot of sinus/ear infections due to them. I've had to have ear tubes put in 3 times since 2004 to relieve the infections and I was getting allergy injections up until last fall. Over the last year my allergies seemed to go into overdrive. I was taking allergy meds, sudafed and mucinex constantly. Once when I was being treated for another sinus infection I had a reaction to the antibiotic Bactrim which gave me hives and mouth and throat swelling. After that I started having anaphylactic reactions more and more when I got my allergy injections (mouth/throat/face swelling). Sometimes they could stop them with prednisone/benadryl/pepcid and sometimes they'd have to use epinepherine. But once I left the office I was fine...until one day in November. I was fine when I left, but later that evening it started up again when I ate something. That started a 2 month jag of severe, almost daily reactions to foods, beverages, heat, cold, stress, medications, you name it. I ended up in the ER twice, once by ambulance. My symptoms during these attacks seem to change with each attack. The worst attacks bring on sudden swelling in my mouth, a sharp drop in blood pressure, messed up vision and nearly passing out. Other attacks bring loud ear ringing, burning red eyes, flushed face and ears, warm rashes on my neck/trunk/legs, racing pulse, hands/feet go cold & numb, stomach pain/nausea/heartburn, bone/joint pain, visual disturbances/dizziness, a feeling of tightness in the skin on my neck and face, and increased mucus production. The symptom I seem to get with all attacks is swollen throat, roof of mouth, and inner ears. Oh, and in the last 2 years I have become covered in spots on my face, chest, arms and legs. All of these symptoms have me feeling miserable, scared and frustrated on a daily basis. I pray every day that I can get this under control but I am losing hope.

When all of this started in the fall, my allergist was not helpful at all. He gave me an epi-pen and said stay away from things that make you react. Two more allergists I saw ran bloodwork (tryptase, complement, CBC) My tryptase was 2, 3 and 5. My complement was normal, but my white blood cells were high and my basophils have been high on every test. They said that shows I am having allergic reactions but that I didn't have mastocytosis because my tryptase was normal (the tryptase was never drawn during a reaction). One of the docs tested my immune system and my IgG total and IgG subclass 1 were low, which would explain the frequent infections I get. I was positive to peanut (mildly) on RAST testing although I've never had . Serum IgE was 140, normal.

I sought ought the head of allergy for Washington University in St. Louis, our biggest teaching hospital/university. He did skin testing. I couldn't believe that I made it 4 days without antihistamines, but I ate next to nothing to be safe. I came up positive for all the pollens, dust, mold, cats like normal but also to peanuts, soy, peas and cauliflower. That surprised me, but I am still reacting even when I avoid those things. He also did more RAST testing which I haven't gotten results for yet. I am going back to see him early next week and I'm preparing myself for him to tell me what all of the other docs did....bad allergies, avoid triggers. I am wondering how to ask him to please look further because I am miserable and avoiding triggers isn't enough. Just last night I had another very big reaction to Augmentin. I had the same med last October and did fine, but last night I shocked. It was one of my top 5 reactions in severity. I didn't use the epi pen and go to the ER because it was late and we had no one to watch our kids. I know that is stupid and I wish I had gone and had my tryptase drawn. Instead it took hours and hours of angioedema, high blood pressure, and feeling that someone had poured acid down my throat into my stomach. I took zyrtec, benadryl, pepcid and prayed for it to stop. I seem to be back in a very reactive state since I had surgery to put in another set of ear tubes last week. Before the surgery I asked them to put benadryl in my I.V. and I got that weird feeling of swelling in the roof of my mouth and throat when they administered it but I did fine with the anesthesia.

I keep wondering and hoping there could be some other reason for all of this. I'm going to ask the allergist Tuesday to test me for carcinoid. I'm also wondering about autoimmune condtions. One other big piece of medical history on me that I doubt is important here, but I'll mention it just in case. I have a mutation on a gene that causes hereditary breast and ovarian cancer called BRCA2. Due to the high probability that I could develop these cancers, I had a prophylactic mastectomy and hysterectomy. I take a low level of estrogen replacement in patch form. I wonder if any of this could be related to hormones?

My normal daily meds are claritin and pepcid in the A.M. and zyrtec and pepcid in the P.M. I know that seems like undermedicating, but I have had problems with allegra and zantac. I also have felt strange the last few times I've taken benadryl. I'm terrified of becoming sensitive to that, cause then what do I have to fall back on? After the reaction to augmentin, I'm afraid to try another antibiotic for my sinus infection, yet I know if I'd get rid of it, my reactive state might calm down. My husband wonders if the augmentin only caused a reaction because I seem so highly reactive right now. Taking the antihistamines doesn't seem to be enough to stop the reactions and often doesn't fully stop them once they start.

Thanks to all that have taken the time to read my novel :) Sorry it was so long. I appreciate all of the knowledge you share on this board. It has helped me feel less alone and hopeless.

Kristi

Title: Re: Hello...I'm Kristi
Post by DeborahW, Founder on 04/03/11 at 10:06:12

Oh my gosh. You certainly sound like a walking mast cell disorder case, and you are not taking strong enough histamine blockers at all! I think that if it were me, I would send my hubbie out to get zantac and I would start taking 300 mg twice day. (I would buy the 150 mg pills, take one 150 mg first and wait 30 minutes. You shouldn't react, but this gives you time to see. After you are fine for 30 minutes, take the other 150 mg.) You are taking zytrec, so that is good. You should also buy allegra (180 mg). They are over the counter now also. Those are the 3 basic histamine blocker meds. I take those. When I react, I have to take an extra allegra or zyrtec to stop symptoms.

I take:
7 am 300 mg zantac
180 mg allegra

4pm 300 mg zantac
10 mg zyrtec

If I react before 4 pm, I take an extra zyrtec. If I react after 4 pm, I take an extra allegra.

The claritin and pepcid you are taking is like baby stuff, and your symptoms are those of anaphylaxis that no one is recognizing. We have different levels of anaphylaxis, and they eventually lead to passing out and organ failure. You never want to get there, and you don't need to. I have been there before and learned how to prevent it. So, don't worry, you can too!

I just advised another new person to read my intro story, and I would advise you as well. You can find it as the first post in this section. I'm going out now, but will be back to give you more suggestions as well. Tonight, try not to eat after 6:00. Just drink water. We are more reactive at night, so we have to be extra careful then!

Title: Re: Hello...I'm Kristi
Post by Riverwn on 04/03/11 at 13:17:28

Kristi, my heart goes out to you. Im so sorry youveb really been through it! Im so glad youre here with us now... You still need testing done but those antihistamines arent going to hurt you to try more.. you ma become a bit fried out but you will get used to it.

I agree with Debbie 100% !! Please follow her advice, its excellent and Im worried about you. Remember that not all mast cell disorder people will have a raised Tryptase.. but still have them draw it if you have an episode. And remember that mast cell patients have some allergies but more triggers than allergies--which react exactly the same and are treated the same.
Please let us know how youre doing... we DO care and we're here for you!!
Hugs
Ramona

Title: Re: Hello...I'm Kristi
Post by Riverwn on 04/03/11 at 13:18:41

lol fried out---DRIED out
ok my spelling sucks ;D

Title: Re: Hello...I'm Kristi
Post by DeborahW, Founder on 04/03/11 at 15:09:17

Kristi,

I forgot to say that you should NEVER go off histamine blockers to do allergy testing. Any allergist who knows mast cells knows that the histamine blockers won't affect your results. Plus, it really isn't safe for you to do skin testing. We tend to have the blood tests for allergies. This advice about not going off the meds is standard advice from the top mast cell disease doctors (there are only a handful of them). Also, I hope that it is has occurred to you that those allergy shots were probably pushing you deeper into the problems that you were having. I wouldn't advise ever doing allergy shots again if you have mast cell disease. Unfortunately with this rare condition, we have to be our own advocates and realize that most doctors can be WRONG in their advice to us. It boils down to the fact that we can feel confident in th eadvice coming from the few mast cell disease researchers, but we must remain aware and vigilant regarding advice from other docs because no matter how nice they may be, they don't know a fraction about the condition as the researchers do. So, we need to consider the local doc's advice and then decide how to use (or not use) it.

Title: Re: Hello...I'm Kristi
Post by Joan on 04/03/11 at 16:00:04

I'd like to add a few things to the sage advice already posted. An allergist who is not an expert in mast cell disorders is not the right doctor to rule out other possible diagnoses with symptoms similar to mast cell disorders.

Your spots, especially if they look like urticaria pigmentosa and if they redden and itch when disturbed, or if they look like TMEP, should be biopsied. This will help in a diagnosis. I would call the dermatology department at Wash. U. and ask if they have a doctor who can diagnose cutaneous mastocytosis, UP, or TMEP.

I react to IV Benadryl but can take it orally. Some people react to it in any form. Hydroxyzine (Atarax/Vistaril) might give you relief, and you might be less likely to react to it since you can take Zyrtec, which is a newer form of hydroxyzine. For any meds, try to find a dye free version to eliminate that as a possible trigger.

Look on this forum for Starflower's chart of testing to rule in or out mast cell disorders, so you can talk with your doctor about this. Since your allergist knows little about mast cell disorders, you have two choices. First is to go see a mast cell disorder expert, and there are only a few in the U.S. Dr. Akin and Dr. Castells at Brigham and Womens in Boston probably see the most mast cell patients, and they can help you get a confirmed diagnosis. If you don't feel well enough to travel, you can have your doctor contact them to find out how to proceed. Some allergists are touchy about this, so your internal medicine doctor may be the one to handle this. You may have to be assertive in asking for the testing you want.

There are some doctors in the hematology department at Washington U. in St. Louis who are familiar with mast cell disorders and may be able to do your testing or may be able to refer you to someone who can. (They are involved in a drug study for people who have aggressive mastocytosis, which you probably don't have with a normal tryptase.) They may know or have heard of Dr. Akin and/or Dr. Castells and may be willing to contact them on how to proceed with your case.

Have you gotten on the low histamine diet? Foods that are high in histamine or that cause direct histamine release can keep your trigger "bucket" full and almost anything then can make it overflow. It can't hurt to eliminate anything that could be a trigger for you.

You might want to ask your doctor about stopping the estrogen as a trial to see if it's making you worse.

Keep us posted as to what you find out! Everyone here does care!

Title: Re: Hello...I'm Kristi
Post by Lisa on 04/03/11 at 16:07:24

Hi Kristi!!

I'm sorry for how things have been for you!! You sound like you're really going through the grinder trying to find answers. I hope we can help you!

As to your surgery, the mastectomies and hysterectomy, you could have some kind of connection with this, but not quite like you think it might have.

There are some cases that are cited in which women who had masto found great improvement after having hysterectomies. The removal of their ovaries helped to stabilize their disease for estrogen has been connected to mast cell mediator release. However, although I've not found an article that claims the opposite, that of the surgery being the cause for the masto. Mastocytosis can not be caused by a hysterectomy, or more like, the removal of those organs and thus the loss of those hormones isn't the issue here. Yet, the surgery itself, that of the trauma your body suffers with the surgery be it either the mastectomies or the hysterectomies for the surgical trauma itself could have triggered the dormant mast cell disorder, or the anesthesias used could have done it. I have spoken with a masto authority, Dr. Cem Akin, and this is the answer he gave to me.

You see, Kristi, it was with my hysterectomy that my masto came out of hiding. It was dormant and nobody knew, including me, that I had latent disease waiting for something to wake it up. A hysterectomy is a very stressfull and physically traumatic surgery and it takes a lot out of our bodies. I kept my ovaries, but just the trauma of the surgery itself was enough and my body began to go crazy almost immediately following it! A direct line was draw between before and after that not even my gyno had doubts. He knew something was wrong with me and that it was not emotional. Eventually he was the one who had to go hunting down my symptoms and what they indicated and the suspicion for masto and carcinoid were raised by him.

Kristi, I had to go through a great deal to find my answers, and part of the reason was the hysterectomy due to the fact that many doctors thought I had lost my sanity. They couldn't believe that a woman could opt for medical reasons to remove her uterus, but I had fibroid tumors and the risk of breast cancer in my family and so I made a medical decision to protect my health. I'm sure you've had to battle many of these very issues yourself. It must not have been easy to make the decisions you've made!!!

But your case seems to be different in that you seems to have had issues prior to your surgery and this is important. My case has an autoimmune element to it and this has an important role in my masto, but because I have no spots, this forced me to have to go down the route of seeking out the carcinoid syndrome. You do have some testing which needs to be done, both looking for carcinoid and masto.

So, I wouldn't ask your allergist to run these exames, I'd be looking for an oncologist who is knowledgeable in carcinoid tumors instead for they are hard to diagnose. You need to have two major tests run, but there are other cancer markers which need to be run as well. The 24hr urine 5-HIAA test is for methyl-serotonins. You also need to test blood serotonin levels and also that of Blood levels for Chromogranin A or CGA. These are the major markers for Carcinoid.

As to masto, you need to see a dermatologist and have them go over you for any signs of skin involvement. However, that tryptase level you have is, although in normal ranges, is considered higher than the average person. There are other things which can elevate tryptase in to the 3, 4 and 5 ranges and smoking is one of them. I was just speaking with a researcher in mast cells and he told me that my reading of 4ng/mL was elevated above that of the normal person. A nromal person has a reading of <1ng/mL! So that shows you how much higher you are than the normal Joe. But it's not so high that it's diagnostic for SM. Yet, it is diagnostic for MCAD and that's because they are finding other forms of the disease where the typtase is low.

As to the benedryl, you may want to chose another form of the medication. You might be reacting to dyes or fillers.

The trick here is that you're needing someone who is an excellent immunologist to do some serious sorting out with your disease. You may indeed have a mast cell disorder, but it's too soon to say this and you don't want to convince yourself of anything until things are more apparent, so keep your mind fully open and don't allow your mind to convince yourself of having the disease until you've got more PROOF of it.

If, you were to think of travelling to see one of the masto researchers, Dr. Lawrence Schwartz would be the man to see. He's in Richmond Virginia and he's an excellent immunologist. He would know how to sort through your true allergies and anything which might be a mast cell disorder.

If you want his contact info, just send me a PM and I'll be glad to give it to you!

Lisa

Title: Re: Hello...I'm Kristi
Post by Kristi on 04/04/11 at 02:45:39

Thanks for the warm welcome and helpful replies.

Deborah, I know the allergy shots I was getting were probably what started all of this and it makes me sick to my stomach to think that I did this to myself. I just wish the allergist would have noticed the red flags with me having anaphylaxis almost every time I got shots.

I am going to try the zantac and allegra again, even though it scares me. The zantac gave me stomach pains but the allegra made me feel the throat swelling and weird vision disturbances. I'm seriously thinking I need sit iin the parking lot of the ER when I take new things just in case. Sometimes the reactions come on so fast and hard that I worry about the 15 minute drive to ER.

I am all for seeing Dr. Akin or Dr. Castells if they are the experts. I traveled to New Orleans to have my risk-reducing breast surgery because that is where the experts were. I feel like I also need to have a doc here to coordinate my care. Is it appropriate to mention this to the allergist I see on Tuesday for follow up? Does it take long to get into them? Did those of you that went to them get insurance coverage? Out of network? Do I also need to see Dr. Schwartz to get the other testing to rule out other possible disorders?

I'm trying not to convince myself I've got SM until it's proven, but Lisa's comment about my tryptase level has me worried. Since December mine has gone from 2 to 5, which is higher than the average <1 and quite a quick jump. The 5 reading was 3 weeks ago. I think I'll ask the allergist if he'll test it again this week. I'd feel so much better if I saw it going down again. I think this allergist is somewhat knowledgeable about SM and treats some patients with it which is why I sought him out.

I will look for Starflower's post of testing to rule out other disorders. I just need to decide if I want to see a local doc at Wash U. I'll ask the allergist if he knows of the study being done by hematology since it's the same hospital. He might be in the loop.

I'm glad to hear my hysterectomy/hormones aren't likely to blame in all of this. I ran out of estrogen patches in January and had to go cold turkey for several weeks. My mast cell symptoms didn't improve and I had horrible hot flashes. I think I'll keep using those.

Thanks again to each of you. I will let you know what happens after my appt on Tuesday.

Title: Re: Hello...I'm Kristi
Post by Kristi on 04/04/11 at 03:02:46

I cannot seem to locate the list of tests by Starflower. Can someone please point me in the right direction?

Thanks!!

Kristi

Title: Re: Hello...I'm Kristi
Post by Josie on 04/04/11 at 03:35:17

Hi Kristi ,

My tryptase is negative

You have had too many close calls sweets . I was in your situation , having 3 weekly anaphylaxis and more frequently in spring and high stress times . It was ONLY when I got to a specalist that I started to get the treatment I needed . Even now I need reviewing BUT I am now only going to ED every 3-4 months . i was highly at risk , my local ED had a spot for me . I know the thought of systemic masto is scary . Its only scary if you are not treated properly .

Right now , you are an undiagnosed mast cell patient and more importantly UNTREATED . The treatment will not cure this but it can manage this so you are ok ;-)

I can see your allergy guy thinks he knows masto / mast cell disease . You need a doc who knows it inside out . Why ? because its a naughty disease that is not the same in everyone sweets .

I have seen so many doctors , its only now I am more controlled . There is still work for me to do , but that is true for many .

It took me having 2 anaphylaxis 3 days apart for me to really take this seriously .

Please see a specalist .

I completely understand you need a local doc . Once you have seen the specalists they will liase with a local doctor for you into the future . You will remain their patient forever . This is how specalist they are . They know they have to follow their patients as no other doctors have their mast cell knowledge .

I understand your fear of not getting to ER . can you ring 911 ?? I ahve anphylaxis affecting my airway quickly and i can't talk to the ambulance control . i have it set up that if I ring and they can't hear me I have a rapid response bike or paramedic . I also have a keysafe outside so they can let themselves in . they have the code . I also have , for if I am away from home a dictaphone with all my details on which i can play into the phone . I ahve needed it to be safe . i now have an alarm system I press and the controller rings an ambulance ;-)

Did U have tablets of allegra and zantac ?? if so , I think trying efferescant zantac and liquid allegra ;-) may help . It has helped me .

What are you eating right now ???

I was petrified for months . Now I know the things I need to do to be safe ;-) I understand on a very deep level .

many hugs
Josie

Title: Re: Hello...I'm Kristi
Post by laura on 04/04/11 at 05:40:38

Hi Kristi,
For many years, I had several doctors tell me that they didn't know what was wrong with me and even that my symptoms were psychosomatic , or in my head, before finally getting diagnosed with mast cell diosrder. Thankfully, I live near Boston and my infectious disease doctor brought Dr. greenberger from Brigham and womens hospital into the emergency room to examine me. The telltale test for me was called Dariers sign, which involved the doctor rubbing his thumb along the top of my back. My back became very inflamed and stayed red for a long time, which is abnormal. Here is the definition: Darier's sign is a change observed after stroking the skin of a person with systemic mastocytosis or urticaria pigmentosa. In general, the skin becomes swollen, itchy and red. This is a result of compression of mast cells, which are hyperactive in these diseases. These mast cells release inflammatory granules which contain histamine. It is the histamine which is responsible for the response seen after rubbing the skin.

I am not a doctor, but I have gone through four very serious hospitalizations before being diagnosed. Every time I go to see Dr. Greenberger, I see patients that have come from all over the country. I recommend that you try to find a doctor nearest to you that has experience with mast cell disease, because many of them have no idea and dont have any interest in learning.

I hope this helps and that you feel better soon!
Laura

Title: Re: Hello...I'm Kristi
Post by Starflower on 04/04/11 at 05:47:39

Kristi wrote on 04/04/11 at 03:02:46:

I cannot seem to locate the list of tests by Starflower. Can someone please point me in the right direction?

Thanks!!

Kristi

Here you go :)

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1296696091

Title: Re: Hello...I'm Kristi
Post by Kristi on 04/04/11 at 07:36:45

Starflower--thanks for the link.

Lisa--I would love for you to send me a copy of your blood test spreadsheet. That's a great idea.

Laura--thanks for your input. I forgot to mention that back in December when this all got bad I read about skin spots being an indicator of SM. I went to my dermatologist and he biopsied two of the larger more pitted-looking spots which came back as age/liver spots=no mast cells. I'd say maybe 1/4 of my spots look like that, the rest look more freckle-like. Maybe I need to have a few of those biopsied. They make up the majority of my spots. I'll add that I was never a freckly person until a couple of years ago. The dermatologist also scratched me to see if I had Darrier's sign. I didn't. It sounds like you've been through a lot with four hospitalizations. I hope you are feeling better now. I am ok with traveling to an expert, just unsure who and how to get started.

Josie--you said your tryptase is negative. May I ask what the number is? You asked what I'm eating. Well, I have existed on mostly rice chex and an occasional potato for the most part since this began. The dr said I have to be brave and start branching out and trying new foods, but every time I do it backfires. It stinks. I'm so frustrated over not being able to eat. Surprisingly, I've only lost about 5 lbs, but I'm fairly thin to begin with.

Thanks Ladies. My husband is so happy I finally have someone to talk to that understands what I'm going through.

Kristi

Title: Re: Hello...I'm Kristi
Post by Josie on 04/04/11 at 09:13:11

Hi Kristi ,

My tryptase is 3 . I need to check it against my in reaction levels . But I know one was 3 . So , on bloods I am constantly negative . My CRP and ESR are raised and have been since the beginning of this . This are inflammatory markers . Infection shows as increased white cells and CRP/ESR . Inflammation , white cells normal , high CRP /ESR .

I am similar in spots . i have lots of new freckles and red dots , which i will show my specialist . My freckles go red when i am reacting . None have dariers sign . This makes them more likely to be temp , which is a rare form of urticaria pigmantosa . More questions for my specialist ;-) I think Biopsies of the freckles is a good idea , then you will know ;-) I ave one which does utricate , just yesterday , so ill offer my GP a look at that one !!!!!!!!!!!!!!!!!!!!!!!!!!!

Food is such an issue for many of us . There is a low histamine diet , if you try anything make it from there . I think sticking with what you know may be advisable . As you are in what i call a snowball , where you have reaction on reaction , this can be due to many things . Common ones are stress , infection or just good old contents of the mast cell triggering more bursting of mast cells .

last year this situation made me react to a fresh orange . Am I allergic to oranges , no , but my tummy was so poorly , I was reacting to everything .

Getting your meds to a good level is vital . What are you on ? If you look in avonleas ( whitneys ) thread , hoping for a new day you will see what I am on . With this I am doing ed every3-4 months . much better than before .

Augmentin in penicillin . Trimethrprim is not but the sulpher element in bactrim may have been the culprit . You need to avoid peniccillins from here on in and trimethroprim and sulphur based antibiotics . As your reactions have been anaphylacitc to these . A blood draw can be done on meds , I know I am repeating others but . IT IS DANGEROUS FOR YOU to stop your antihistamines sweets . They are between you and a serious anaphylaxis .

I understand your grading of reactions I have the same bredth . BUT my biggies are what has made me push for the right doctor . You need to be protected sweets .

I hope your reactions have been taken seriously .

An IGE of 140 isn't normal sweets . Over 100 is anaphylaxis level .I have several true allergies like you . cats , grass , house dust . mast cell disease just puts a big microscope over any allergies and makes them bigger . Control of the underlying problem will help but they are with you .

I am glad your here , I just want to hear you have been to a specalist as I know where you are and you need the protection of a proper medication regiemn , now .

many hugs

Josie

Bone pain in my arms now . urrrrrrrrggghhhhhhhhh

Title: Re: Hello...I'm Kristi
Post by Lisa on 04/04/11 at 10:42:19

Kristi,

My tryptase is 4! I'm going to be restesting it next week. You don't need to worry about SM until you've got a baseline reading of over 20ng! The higher the number, the more mast cell burden there seems to be. The correlation is proven, although according to Dr. Castells, there is another mediator related test which may be more reliable, however it's not commercially available yet and this may take some time. Some of us have low tryptase levels and yet they don't know why. it may be that it's due to the form of masto we have, but then it may not be, they aren't certain yet. However, what they do know is that those patients who are true SM patients have high levels and so, please, get it out of your head that you are having anything to have to seriously worry about yet as far as the mast cell neoplasm goes. If you had any kind of aggressive SM then YOU'D KNOW IT and so would your doctors! Your CBCs would be SCREAMING out due to all of the alterations they'd be showing and they'd have hospitalized you by now and you'd also be diagnosed by now.

Remember this - aggressive disease, be it autoimmune, or cancers or any other kind of disease SCREAMS out at the doctors!! If they aren't jumping 10 feet in the air when they see your tests results, then BE AT PEACE. You may have something wrong with you, but it's not so seriously wrong that it's life threatening. Masto, even though it's a neoplasm is such a SLOW GROWING neoplasm that it's not considered an aggressive disease and the ONLY TIME it's considered cancer-like is when it's in it's aggressive form. Smoldering masto is considered threatening, but even then, it's not yet crossed over.

So, from going to 2, 3 to 5ng/mL, this is not a big jump and it's not important. You could have been more reactive and this would reflect that higher activity, but it would not cause any doctor to jump out of his skin, which is why you have doctors who aren't even blinking!!

So, be at peace, you're doing okay!!!

Lisa

Title: Re: Hello...I'm Kristi
Post by Starflower on 04/04/11 at 13:25:25

I agree with Lisa about the tryptase... there's no significant difference between 2 and 5. It doesn't completely rule out SM (the only way to do that is with a bone marrow biopsy), but it does make it considerably less likely. (Of course... there are other types of mast cell disorders where people have normal tryptase levels... that's why you need a good mast cell specialist to interpret your test results).

I disagree, however, that "life-threatening" autoimmune disorders always "scream" at doctors. There have been cases of people with lupus (SLE) who had negative ANAs. It's uncommon, but it happens. A negative ANA didn't stop me from going into anaphylaxis... and a positive ANA didn't mean my disorder was suddenly that much worse! Doctors always have to look at symptoms and lab tests TOGETHER.

I'll get off my soapbox now ;)

Heather

Title: Re: Hello...I'm Kristi
Post by Lisa on 04/04/11 at 13:55:52

Okay, so I stepped out of my area of knowledge into autoimmune and there are exceptions. But then I'm talking about AGGRESSIVE disease and I think that it's pretty safe to say that when we're talking about any aggressive disease that doctors find that you've got something aggressive bugging you. They may take their time to pinpoint exactly what it is, but things scream at the doctors that something is seriously wrong.

But I know, however, that I'm not wrong about masto. And Heather's right in that they take many other exames and look at the big picture they paint.

Kristi, although it's easy to get upset when you see any one exam which is not normal and it makes you wonder and get upset, what any doctor will tell you that normally only one marker is not a big deal especially if other markers are not saying anything to them. You've got to have more than one thing that's off, and as far as masto is concerned, that of systemic mastocytosis, the classic, neoplastic disease, that of what invades tissues and can become aggressive, this is not at all indicated by your tryptase of 5ng/mL. And, another thing is that tryptase can go up and down, it doesn't always just climb.

So again, Kristi, don't get all tied up in knots over this tryptase of yours, you in a good situation if you've got masto - it's a good sign.

Lisa

Title: Re: Hello...I'm Kristi
Post by Kristi on 04/06/11 at 15:28:45

Thanks for urging me to calm down about my tryptase level and showing me it's not all that out of line.

I went to the followup appt with the allergist and don't have much to show for it. He isn't thinking mast cell at all. He is totally focused on foods and wants to get me eating a well-rounded diet again. He is downplaying the severity of my reactions, which upsets me. The one good thing that came out of it is I asked him if I could try taking allegra and zantac while in the office, because I think I've had problems with them in the past. Well, I'm happy to report I did fine and I've replaced claritin and pepcid with these stronger drugs. I've felt better the past two mornings since taking them, but my nights have been awful. Baby steps, I guess.

I am now ready to call the docs in Boston. I just want somebody to help me.

Kristi

Title: Re: Hello...I'm Kristi
Post by Joan on 04/06/11 at 15:55:38

Kristi,

Are you taking the Zantac twice a day? That's what most of us do, or we alternate Pepcid and Zantac.

Be sure not to eat or drink anything besides water within 2 hours of bedtime. That nearly cured my morning nausea. Doxepin helped a lot, too. I take digestive enzymes, but with your reacting, anything new should be taken in the doctor's office.

Hope you can get to Boston to see someone! Good luck!

Title: Re: Hello...I'm Kristi
Post by Lisa on 04/06/11 at 16:46:50

Joanie,

Here you go with these golden bits that you pop in there without even realizing how precious they are!!

Here i've been telling my husband lately that water is giving me reflux!! he just looked at me with that look of GO FIGURE!!!!!! WHAT NEXT??!!

I kept think, Nah, how could that be WATER??? TOO ABSURD!! Yet, it's been really bothering me cause you can't go without water, but here it's upsetting my stomach!! Well, I can handle that during the day, but to lie down at night and have to get up and go and take an omeprazol and then still be burping away, it's just too absurd!!

Thanks for giving me the key to it!! It IS the water!! WHY? is my next question! TOO WEIRD THIS DISEASE!

Kristi!! I'm glad you're feeling better! Joan's right, most of us take those meds 2x a day - that's because they only last 8 - 12 hours!! You'll do better asking your doctor to double them!

Lisa

Title: Re: Hello...I'm Kristi
Post by sue on 04/13/11 at 16:50:06

Hi Kristi. I'm a new member and also live in St. Louis. I've been seeing Dr. Anadkat, Dermatologist, at Washington U for 5 years. He recognized my masto right away and confirmed it with a skin biopsy. Last month he finally tested my tryptase level and referred me to Oncologist Ken Carson, also at Wash U, when my level came back at 170. I had a bone marrow biopsy yesterday, so we'll see what's next.
Anyway, the above two doctors are familiar with masto. Good luck!
Sue

Title: Re: Hello...I'm Kristi
Post by Kristi on 04/15/11 at 03:12:51

Hi Sue,

It's nice to hear from someone here in St. Louis. Thanks for sharing the names of your doctors. Right now I'm seeing Dr. Wedner, chief of allergy at Wash U. My tryptase has been 2, 3, 5.3 and 5.7 this week. I see that as a steady climb but nobody else seems worried.

I hope your bone marrow biopsy gives you a better picture of what's going on and that Dr. Carson is able to help you feel better.

Please keep in touch and let me know how you're doing.

Kristi

Title: Re: Hello...I'm Kristi
Post by Josie on 04/15/11 at 04:13:44

Hi Kristi ;-)

I have had doctors focused on all sorts of things ;-) What you need is a mast cell specialist ;-) They and they alone are qualified to properly interpret your results . We have a great deal of knowledge here ;-) But you need that which we can't give you - a diagnosis ;-)

Regards the foods , trust your instinct ;-) Why do I say this ? because I tested negative for everything I have reacted to , but when I said OK , I will try things , my consultant urged caution . That if it had made me poorly , to not reintroduce . Only try things you were avoiding . But haven't tried . If you have never liked it , then I have found It should not be tried ( be on the naughty list ) .

My morning nausea and vomiting has been made much better with 300mg Ranitidine twice a day and an anti - sickness , which is helpfully an anti histamine . ;-) It still sneaks through . I have also learnt to lie still and let my meds work ;-) learnt the hard way .

My stomach will mis behave with absolutely any input when it wants to . including water ;-) My partner hands me the bucket when I am very burpy or swallowing lots .

I also have vomiting after diarrhea as the spams go back up to my stomach . This is much better with ranitidine ;-)

Jose

Title: Re: Hello...I'm Kristi
Post by Joan on 04/16/11 at 05:59:28

Hi Kristi,

I have never seen anything published, and I can't think of any medical reason that allergy immunotherapy would trigger mast cell disorders. I don't believe you did this to yourself! People are exposed to triggers all the time that are far more potent than an immunotherapy injection.

It's not healthy to blame yourself for your illness. If you have true systemic mastocytosis or MCAD, no one knows for sure why it began. Many of us feel it started with a bee sting or viral or other illness or, in some cases, with childbirth, or other things. Dr. Akin believes SM is caused by a gene defect triggered by an exposure to radiation.

It sounds to me as though you were already getting worse when you began the allergy shots, and they just made things worse. The Bactrim could have caused it to get worse, too, or it could have just been coincidental. You likely were on a downhill slide already.

Allergy shots can exacerbate your symptoms, especially if you're already in a very reactive state. Most people with masto are advised not to take them. I have true allergies, and I've taken allergy shots for many years without too many problems. I'm VERY careful, and I back off on the dosing during my worst seasons or if I'm not feeling quite 100%. I increased my dosages by miniscule amounts and took several years to get to maintenance. I would not recommend them for anyone else. I started on them before I was diagnosed and didn't know I shouldn't!

If you can't afford to go to Boston or NIH for a complete workup and diagnosis, I think you might want to consult with Sue's doctor at Wash. U., but I would first check out Dr. Timothy Graubert, a hematologist at Wash. U. I checked into Dr. Graubert a year or so ago, because he is involved in a study on midostaurin (PKC412), a new experimental drug for patients with aggressive mast cell disease. (I ended up seeing Dr. Jason Gotlib at Stanford, because Dr. Akin, whom I've seen before, recommended him.

I'm not suggesting this because I think you have aggressive mast cell disease, but if Dr. Graubert has been running this study, he should be knowledgeable and capable of ruling mast cell disorders in or out. They have had to do basically the same testing that we go through to get diagnosed in order to qualify patients for the study.

Novartis, who is running the study, is very, very meticulous about qualifying people for it, and the testing is extensive to rule out everything else and to rule in mast cell disease. Again, I don't know him, but it might be worth checking to see if they would be willing to do your testing if you can't see Dr. Castells or Dr. Akin.

Hope you find a good doctor! Let us know if you see someone you think is good at Washington U. So many people in the midwest have to travel to the coasts. (BTW, I grew up in St. Louis and have seen a number of great docs at Wash. U.)

One other thing. What did the immunologist say about the low immunoglobulin? Some people who have low numbers and a high number of infections can have an immunodeficiency, that is, they don't make antibodies to certain bacteria. There is treatment for this, and it can be diagnosed by an infectious disease specialist.

In your case, I would recommend trying probiotics if you think you can tolerate them. If you do, start with a tiny dose (open a capsule and use only part at first) and then work up. Intestinal bacteria are one of the essentials for our immune systems to function properly, and antibiotic use destroys them! Yogurt doesn't provide enough live organisms, but supplements do. Mayo Clinic recommends "Align" which is available at Walgreens and other stores.

Title: Re: Hello...I'm Kristi
Post by Kristi on 04/19/11 at 09:26:04

Joan,

Thanks for your reply. I agree that I was on a downhill slide and getting allergy shots was just one thing of many that exposed my illness. I am trying not to blame myself. I'm just grieving for the old me and want to get to a place of stability so I can at least feel normal some of the time.

I would really like to find a dr. in St. Louis to treat me. It's nice to hear from another (former) St. Louisan and I thank you for your suggestion. I found Dr. Graubert's bio from Wash U online but he doesn't seem to work there anymore.

I think I'm going to try Sue's dermatologist and oncologist. I'm wondering if an oncologist will see me since I have a low tryptase. I'll give it a try. I also have an appt. with an ENT on Monday since my biggest reaction symptom at this point is angioedema in my inner ear, upper thrat above my palate and through what feels like the lymph nodes in the left side of my neck.

Today I reacted to a box hair color. Thank goodness I took the allergy testing advice and tested it on my inner arm. I immediately got the above listed symptoms. I'm so darn frustrated. Now I have to live with all the gray hairs this illness is causing!

Kristi

Title: Re: Hello...I'm Kristi
Post by Joan on 04/19/11 at 13:01:48

Hi Kristi,

I understand the grieving part! It's hard, but stability is mostly a matter of getting a correct diagnose and the the right meds, and that takes time, unfortunately. It sounds as though you're pursuing this from all directions, so I hope you'll get some answers soon.

Too bad about Dr. Graubert, but there were others involved in the study who may still be around in case you need a hematologist. I hope you WON'T need one!

There are some "natural" hair colors around, so maybe the gray isn't going to be permanent! Some of the health food stores have some products to try. Good for you to have done the test!

Title: Re: Hello...I'm Kristi
Post by Sandi on 04/19/11 at 18:31:08

Hi Kristi,
Your allergy treatments could have triggered mast cell degranulation, it happened to me, no one listening and stupid me Marine tough kept trying, I'd end up vomiting, diahrreah and almost dead on a weekly basis, (no asthma symptoms and staff had no knowledge of gastrointestinal anaphalaxis with this allergist, , anyway they kept "diluting" the solution and I'd be just as bad. I finally asked to speak with the dumb(*&(*& doctor and told him I'm rejecting this immediately, theres no way the irritants in the solution are what is making me sick what is the base it is in, thats what I'm reacting to. It's too immediate, there was a horrible fumey feeling I'd have right afterwards........ He finally listened rather than saying, his usual It will get better,,,,, and Hey guess who's severly allergic to phenol? The base...... I can't believe I paid for that treatment! Anyway It did up the seriousness of my disease. I am much more chemically sensitive now. Bigtime. Scents would bother me but I rarely went into anaphalaxis as long as I got myself out of the situation. Some chemicals I would almost pass out. After months of reacting to those treatments, I don't have long before It gets very scary. I didn't have time to read all the responses in full so sorry If I repeat someone anywhere! Food Intolerance's are just as dangerous as a food allergy, with a true food allergy once you find the culprit, you eliminate it get an epi and you are better. Intolerance's are much harder to figure out. Also please do the research yourself, paper after paper speaks of the absolute crap shoot an allergy test is! It is a guide to use and give you ideas, they have a huge false positive/false negative, also the "tests" only test a specific protein of a food from one particular variety, there are all sorts of other cellular things to react to in foods. Here's a comment from Barbara et al, a seriously papered person on mast cells and gastrointestinal issues: "However, these tests can often be misleading due to their significant number of false-positive and false-negative results. In a study of symptomatic patients with endoscopically proven mucosal changes to certain food allergens, only 46% of patients had positive skin tests and only 50% had positive RASTs.19"
Back to the allergy desensitization, for me and possibly you we triggered every time we were desensitized. For an allergic person desensitization works. For a mast cell disorder all I was doing was triggering a massive degranulation every single time. It was awful, I still can't believe I didn't die. Once I figured it out they were willing to switch the serum and come up with a non phenol concoction....... Ummmm I was done with all of that! No more not ever for me!
On the food aspect. You may be here already, but for now look at food by each item. Not, a muffin bothered me or a sandwich. There are gazillions of ingredients in every aspect of those! Gluten free Oats, with some raw sugar or pure maple syrup or honey. That's it! Pure meat with absolutely Zero added anything including no "natural solutions or flavorings" In the recipe section I have something posted for the I cant eat anything crowd. For now possibly don't have anything raw. When your gastro system is in distress and being destroyed by all sorts of factors it messes with your permeability, meaning you eat something and more goes through your intestines than should have, suddenly your body says hmmmm a jasmine rice protien, I'm going to attack it and guess who's suddenly intolerant to jasmine rice. ( Ok that was a terrible non medical explanation, I've got a migrane currently and am flushing and not feeling so bueno but wanted to comment) Everyone with gastro issues probably has intolerances and it is absolutely unique to every person, even the histimine foods, 70 percent can't have chicken but 30 percent can. For me I can have the breast, or white meat, but not dark. This week even the chicken is no good. But I'm in a flare, so I'm juggling the best I can the little bit I have. and extra medicating and not even considering anything that I can have "sometimes" those are for the good days! Look at your food, item by item, keeping it as pure as possible, avoiding obvious triggers, major histimine foods, moldy foods etc. Hopefully then you will get your system to calm down and be less inflamed and then you can re introduce foods . I've been terrible lately and this will be the first Easter dinner I won't be having at my house. My relatives all seem to really not give a poo about the "scents" and if they are not wearing a perfume when they come over they've put scented lotion, or are wearing that lovely 14 day gain, DH just said you're too sick and I'm tired of watching you pop antihistimines with a smile on your face entertaining the very people who can't even come unscented for a day and then state, I didn't know it was that bad. Time after time.... I've finally decided Ok, not up to it this week and it's OK! Back to the allergy testing, they did help pinpoint some for me and laughingly soooo wrong with some true allergies. I have tests that total opposites of each other. I am fully aware of Dr Akins statement of never ever off any antihistimines for testing, and I fully agree with him! I don't believe there is an allergy test in the world you can take while on antihistimines! Food elimination and testing yourself will give you the best information. Anyone with a possible mast cell disorder in my humble opinion should not do allergy testing that requires being off antihistimes. I got very sick waiting for my testing to be done. 4 days is a long time.

Title: Re: Hello...I'm Kristi
Post by Sandi on 04/19/11 at 18:36:02

Box color is the worst stuff out there, salon brands are much better they are not as nasty. However they do trigger me,,,,, sadly I'm vain and am still trying to color. I really really pre medicate and we've messed around with brands. Ill keep you informed when I find the least nasty! Going to try framesi soon I think, Redken is awful, I use aveda shampoo and conditioner and mousse, but I react to a lot of the "natural" brands too, they love to use foods..... avocado, sunflower, nut oils, mica, I could go on and on! So test the natural food store brands too, they are very reddish and not multi tonal.

Title: Re: Hello...I'm Kristi
Post by Sandi on 04/19/11 at 18:57:21

P.S.S.s.s. geeze I'm just full of little extras tonight. On the hair, just embrace the greys right now, you are triggering too much! This is the longest my roots have gotten, I have to keep putting it off until I'm having a good day :) so just strut your outfits to make up for the grey! :)
You will gain control with proper diagnosis/ medication/diet and you will be able to know what you can never ever expose yourself to and the "sometimes" things. Today I'm re experimenting on Ranitidine, I had a terrible reaction a few years ago, and had no desire to re-visit it. WEll I've failed many other medications and I'm back to it. I'm a mess I really need it so I'm trying another brand with totally different inert ingredients. So far nothing major, I'm only one pill into it, but for me thats all it takes for a lot of meds, so far so good. I'm really hoping this is a keeper! Best case is it's inexpensive! The antihistimines have to help your ears out! Also food eliminations that too. There are gazillions of studies that show kids with chronic ear infections taken off of wheat, dairy etc and it gets better. Also I so get the mourning your old life,
you can still have spunk, attitude and fun, it's perspective. Usually right after recovering from another anaphalaxis episode. Ever notice how you are so thankful to be alive! You are juggling other issues along with discovering what is going on and it is soooo stressful, in fact because docs don't want to listen to the list of symptoms and connect them! Argggghhh Hmmmm does ranitidine make anyone hyper? I'm waking up! Back to the foods, again, not one single food is the same there are varieties of everything, grass fed, grain fed, I think there are hundreds of rice's out there! Just keep it very simple right now.

Title: Re: Hello...I'm Kristi
Post by missybean on 05/18/11 at 06:12:39

Hi Kristi, If you have spots I would highly recommend getting them biopsied. I have TMEP and many of my spots simply look like freckles or moles and some are telangectasias about the size of a dime and they do not produce darier sign. A dermatologist was the doctor who finally diagnosed me. I called around and asked if the doctors had any masto patients or had ever treated it and made it clear I needed someone who has a good understanding of masto. Thats how I found my dermatologist. Don't give up on finding a good doctor, I went to about 13 different doctors, maybe more. Once you get on the right meds you will feel better. Also the low histamine diet has really helped me.
Melissa

Title: Re: Hello...I'm Kristi
Post by Kristi on 05/18/11 at 10:15:36

Melissa,

I had 2 spots biopsied back in December by my long time derm, and they came back neg. I think I will probably seek out a more knowledgeable derm because I have different types of spots in different places and perhaps one of the other types would show mast cells.

All of these dr appts are really hard to fit into my family schedule and now that my kids are almost out of school I'm wondering how I'll do it.

I saw a hematologist last week and he ordered a head to pelvis CT with contrast (scares me) and a bone marrow biopsy from each hip. The tests are tomorrow morning. I'm not scared of the pain, but I'm scared of reacting to the contrast and lidocaine and versed. He did have me take 50 mg prednisone today and 50 more 1 hr before the CT along with 50 mg benadryl. I wish the prednisone made me feel better but instead I'm feeling worse with tightness in my neck and face. I can't wait for tomorrow to be over.

Kristi

Title: Re: Hello...I'm Kristi
Post by fuchsia1 on 05/18/11 at 10:56:57

Kristi, I am new here too. I just want to wish you good luck with your scan and all your pursuits to find out what is causing all your distress. My symptoms are not nearly as severe or as acute as yours, so I can only imagine how you feel.

One piece of advise that has already been expressed is to get copies of your tests. It must be hard to think about this when you are so concerned about the test, but if you can I think when you get the test is a good time to request it. Some doctors will get a disc for you that you can take to another doctor as well, so maybe you won't have to have the same test another time.

Wishing you well, Marie

Title: Re: Hello...I'm Kristi
Post by Joan on 05/18/11 at 16:58:59

Hi Kristi,

You may not see this until after your tests, but if you're following the REMA protocols, you should be okay. Prednisone can make you feel strange, but if you think you've reacted to it, be sure to tell them tomorrow. Highly unlikely, though.

As you probably already know, stress can also make you feel bad, and I know I was very stressed before my tests. If you feel stressed in the morning, ask for some Xanax or Ativan. You shouldn't have to be uncomfortable in any way.

Good luck, and let us know how you did!

Lidocaine, fentanyl, and versed are all usually tolerated by mast cell patients.

Title: Re: Hello...I'm Kristi
Post by missybean on 05/19/11 at 05:40:25

Kristi, Well I'm thinking of you today and I'm sure you'll do fine. Did you get a copy of the pathology report? Did the pathologist use the correct stain? If I wouldn't have gotten my path report I probably would still be searching for answers. When I got the copy of mine it had a differential diagnoses of TMEP. The dermatologist never mentioned a differential diagnoses. TMEP is harder to diagnose because usually there is only a slight increase in mast cells, but there is spindle shaped cells and usually clinical correlation is necessary to make a diagnonses. Most doctor don't know that. Many of the girls on here helped me and pointed me in the right direction and if I didn't know that information I wouldn't have my diagnoses right now. I called around found someone who already has masto patients and she knew right away what it.
I definetely can relate about taking your kids to doctor appointments. I have a 3 year old and 15 month old and the baby is into everything and I have a hard time finding babysitters, so many times they have to go with. Most of the time the doctors understand, I just bring lots of snacks. But the little one usually has me flushing by the time I leave the doctor. Lol! I hope everything goes well today! Hugs
Melissa

Title: Re: Hello...I'm Kristi
Post by Kristi on 05/19/11 at 11:54:35

Thanks for the encouragement and words of wisdom, Ladies! The tests today were a piece of cake. I did premedicate with the prednisone and benadryl and added my own zyrtec and pepcid for good measure. I didn't have a problem with the oral or IV contrast and I also did fine with lidocaine and versed used during the BMB. That versed is goooood stuff! I don't remember any part of the biopsy, but my husband said I kept repeating "are you finished with the aspiration part" over and over even after the guy said yes. They said I flinched a bit when they aspirated the fluid but that was it. Now I'm just sore which I can deal with. They did a biopsy from both iliac crests (rear pelvic bones). I can't remember why? I meet with the doc on June 1st for the results which happens to be my birthday. I'm hoping that's a good sign!

Fuchsia, thanks for the reminder to get copies of all tests. Most of my docs are part of a large network linked to our big teaching hospital and they have online records that I can pull up and print. It's so nice to manage them and easily print them myself. My derm isn't part of this network so I need to get those copies.

Joan, stress is a huge trigger for me and also a factor that makes my reactions to other things worse. I did follow the REMA protocols but I didn't take any xanax because I knew they were giving me versed during the BMB.

Melissa, I will check to see if they checked for TMEP. I'm not sure if they used the correct stain. Sometimes I feel like if it weren't for all of you, I'd never get to the bottom of this or even have the correct tests.
Thanks for your guidance.

Kristi

Title: Re: Hello...I'm Kristi
Post by Joan on 05/19/11 at 15:16:17

Kristi,

You did everything right, and I'm so glad you got through all of it without problems! I also add meds before procedures, just for insurance. I suppose Versed and Xanax might be overdoing it, but I've gotten so nervous, I would have liked that.

Some doctors do two biopsies because (and someone jump on me if I got this number wrong) 1 out of 6 BMBs are false negatives.

So, Yea!!! It's over!!!

Title: Re: Hello...I'm Kristi
Post by Lisa on 05/20/11 at 12:23:05

Hi Kristi!

I'm so glad you did well with your exams!! You probably will always be able to handle contrast well, but as a precaution you should be premedicated and it should be done in a hospital setting as a safety measure.

As to the bilateral bone marrow biopsy, there is research supporting that this is how it should be done. Joan's right, the research shows that a uni-lateral biopsy could indeed miss it. However, depending upon your case, a bi-lateral may not get it either for some of us who do have the neoplasm may have a certain form which grows so very slowly that it's very difficult to find the neoplasm itself!!

So, a negative bone marrow biopsy does not throw out masto. In my case it did not. We had to use the other pathological changes to know that this is indeed my case that I do have SM, but it's not mature enough to show the neoplasm and it's going to take years in order to do so.

Lisa