No, I don't believe that a BMB can do that, so you need to examine others aspects of your life to see what has changed. Has your living environment changed since then? Have you even slightly changed your diet? What about your lifestyle? Any new things in your life that are stressful?

Once the BMB confirmed your SM, how did you react emotionally to that? Did it make you begin to think about it all the time? We can definitely trigger our own symptoms from thinking about our illness too much and how bad we feel. In the same manner, it is possible to lessen symptoms during an attack if we know how to talk ourselves down from the attack. I know that I start to feel ill when I have to tell someone about my IA. Change the subject, and those symptoms will fade in me. If you feel that your life was turned upside down by getting the BMB diagnosis of masto, then you would have to ask yourself if you are unconsciously triggering your own symptoms by focusing on your illness all the time. Even when I am having an attack (I am a shocker), I take my meds and then surround myself with distraction, such as tv, to get my mind off the symptoms. I never think about my illness throughout the day. I am always aware of avoiding triggers, but that has become my daily habit. I take my meds, but that is also habit now. For me, I go about daily life and give little thought to how I am feeling. If I start feeling poorly, I adapt by changing what I am doing and taking extra meds if needed.

Well, I am sure I could go on forever about things to consider as to the reason your feel worse. Hopefully, I have you given you some things to consider, though, in your search for answers.

Peter,

I learned biofeedback to control pain. Before I was diagnosed and really ill, I had severe GI pain. I went to a pain management center at a good local hospital and learned biofeedback there. It did help, and even today I think it helps me calm down symptoms as needed. Obviously, I still need my meds, but it takes the edge off.

LaVerne wrote on 06/22/11 at 06:35:31:



Hi LaVerne,

I know this paper, LaVerne and I am one of the patients who contributed to it.  So I feel like I can give you a comment upon this comment stated.  

My BMB did cause more activity with me, yes.  In speaking with Dr. Escribano he has told me that some of us patients are more sensitive, we have what he calls Stress Anaphylaxis.  Our bodies will react to the stress of medical testing and even the effects of medications and the such.  Our bodies are highly sensitive and anything which shocks the system will trigger us.  This fully explained to me and my doctors why my BMB created more reacting for me after the procedure.  

My hematologist was shocked for she could not understand why such a simple exam with the removal of so little tissue could trigger me into 2 hours of syncope and then almost a month of triggering afterwards.  She couldn't understand it.  This is why I spoke with Dr. Escribano for I've used his protocols and yet I kept getting these reactions afterwards and this is when he explained it to me.  

So, what do you do?   UP YOUR MEDS!  

What is happening is that you've triggered your body into more reacting.  You must compensate for it in order to bring things back under control.   One of the things I've found is that your triggering will get into a vicious cycle and when that happens, it will feed itself - more triggering only creates even more triggering to the point it will get you into a rut.  The only way to break into the cycle is to up your meds, pull back on your physical exertion and try to compensate as much as you can until things begin to come back under control.  If you are on singulair, you will find this excellent medication to help with all of this activity.  Take an extra dose of your meds and spread them out from 2 times a day to 3 being perhaps 6am 2pm and 7pm  this way you have an extra dose in the afternoon when you are most active and it will help keep things calm.  You could do this for about a week and if things go well begin tapering back, but if you feel it's not long enough, then extend this treatment for about 2 or 3 weeks.  Things will calm back down again.


Now, as to the attitude shown on this article, I know the author well enough to know that she is totally against masto patients doing bone marrow biopsies.  This was an area where we disagreed to the point it caused trouble and I left that website.  I am one patient whose case has been revealed through my biopsies.  My bone marrow biopsy was essencial for it showed evidence of the disease without showing the actual MC aggregates.  We know I have masto due to the lymphocyte aggregates seen in my marrow - this accompanies the MC aggregates usually.  However, it also gives your doctors a baseline as well as well as a view inside your health for our bone marrow reflects what the disease is doing to us.   So, I am a strong advocate of having this done.

However, the motive for that statement is because the person who is majorly against it feels that it is really very unnecessary unless you are showing definite signs of needing it, like a high tryptase count.  Yes, there are patients which will get worse after having had their BMB but I've found that this is due to the fact that some of us are very sensitive and this exame, like any other exam, will shock your system and trigger more reacting.  The BMB did this with me, but then, so did a colonoscope and a CT with contrast!  MY system is just very sensitive and this is why these exams will end up triggering me into more reacting.  But this is NOT the rule for everybody and that needs to be understood.   Besides, if you are in the diagnostic processes, it's important to leave no stones unturned.  My tryptase is low, there was supposedly no motive to need to see my bone marrow, however, if we had not we would not have known what the masto was doing to my body and that BMB showed plenty.  

So, this is why I disagree with the author of that statement, for I feel that it's misleading patients to thinking that this will happen with them, when it doesn't.   As you can see, Deborah is one who doesn't feel that this happens - why?  Because she came out perfectly fine with her BMB and didn't have any further triggering.  For the majority of us, we do come out just fine without any issues.  It's only a few of us who get more triggering.

I also suspect, however, that one of the reasons behind this attitude is that there is a weird kind of snobbery amongst masto patients.  For a long time, due to the way that doctors would treat those patients who did not get diagnosed as SM, the patients who were diagnosed SM rather snubbed those who didn't as not having valid masto!  It's a kind of sick exclusive "group" that these people belonged to in that if you have the full criteria for SM to "belong".  So, the idea of having a BMB done made no sense if you didn't have a raised tryptase which met the SM criteria.  

Well, in truth, most doctors won't see the need for a BMB without an elevated tryptase and what I've learned is that without an elevated tryptase the MCs are way too rare to find so it makes no sense to have it done.   However, again back to the baseline - you may not get a diagnosis, but when we are in the diagnostic phase of masto it's important to get as good of an overall picture as possible for sometimes there is enough overall information which helps to focus in on what the real picture is.  

So, needing to do a BMB is a personal decision, but I, for one am all for it.  Yet, if you are one who ends up triggering and having more activity, then you need to compensate and up your meds until your system settles back down again.


I would have a 24hour vibration going on for about 3 weeks following this.  I would be absolutely miserable for the first week and then have a gradual improvement until finally in my 4th week I'd be back to normal again.  Yet once we added singulair, it was very different and within a week I was almost back to normal!  What an incredible improvement!

I hope this helps,

Lisa

Peter, you know, I don´t know!!   That´s a very interesting question!!  Perhaps they never leave the bone marrow, that those are the ones that remain there and mature there but since they don´t die off easily, this is why they end up backing up and clogging the drain, shall we say.  

That´s a good question for Dr. Afrin I think.

I had no worse symptoms after the BMB, and I've had two, and many others have been the same.  I'm sure some people feel they were worse afterwards, but I wonder if it's stress, too, or other factors, as others have mentioned.  I don't know of anything intrinsic in the procedure that could cause a flare.  

I was pre-medicated using the REMA protocols before both, and that is critical.  If you're worried about it causing a "flare" of symptoms, you can continue to take a higher dose of antihistamines for a few days afterwards and wean yourself back down to a normal dose.  For one biopsy I was given conscious sedation and for the other one the protocol drugs plus some Ativan to relax me.  No pain from either, and just very mild discomfort at the site after for a day or two.

For myself, I would have the BMB if I had a strong suspicion of systemic mast cell disease, and while it's definitely covered by insurance.  It doesn't sound as though the dragon is sleeping very soundly if you're having such bad symptoms.  If you can get diagnosed definitively, you can be medicated properly, and your symptoms may lessen to a great degree.

LaVerne,

If you are really reactive then you should wait until things have calmed down a bit.  If your CBCs are nice and pretty, even if you have a high tryptase, there's no need to rush.  The CBCs will show if the disease is serious enough to merit the rush, but their being in normal ranges means you can wait until things are more stable and you're feeling better.  

I've had my BMB create more issues with me.  It totally threw my hemtologist for a loop, but not my dermatologist - my dermatologist knows masto, me hematologist does not.  

I have another BMB I'll be doing by my choice this time.   We're going to try again to see if we can find Wally.  I know it'll trigger me to more activity, but I've learned that everything I do ends up doing this and that I've got to increase my meds and keep a low profile until things settle back down again.   This is how my body works.    I MUST use the REMA protocols and I MUST do this within the operating room and with an anesthesiologist on hand with sedation and the whole shebang.   I am always at risk with any medical procedure.   I go through what is called Stress Anaphylaxis and I am an extra sensitive patient with these procedures.   Some of us are and they don't know why.

Now, as to pain, I really wish Peter I knew why some of us have a lot and others don't.   I was in the mid-term group.  I didn't feel a thing during the process because my anesthesiologist knocked me out.  But afterwards my back hurt and was swollen for a few says.   No infection, just the region feeling the process.  



Peter, on a side note, as to having your head chopped off, I remember you and I going at the fibromyalgia discussion about a year ago and it got pretty heated, but not that I had intentionally attacked you or anything although I'm sure you felt that I had.   I was, at the time, not up to where you were in vision of all of this but I've finally caught up to you and I want to publicly apologize to you for that discussion we had!!   Although I can't prove my theories and although the doctors I'm speaking with haven't confirmed them either, they've also not put me in my place discounting them.   I have now come to your own opinion that fibromyalgia and a whole bunch of other things may be as you think, mast cell disorders.   They aren't mastoctyosis - this would be the full blown defect, but they might be degrees of mast cell defects and this is why they involve the mast cell in their disease.   So, Peter, my hat's off to you!!  You've done a great deal of study and were way ahead of me on this!!!  I've only now caught up to you to recognize it!!!   I do apologize!!

Lisa

Peter;
It doesnt matter how you spell- you still make a Lot of sense!
And LISA- Very classy of you to apologize publicly for a year old debate!
Hats off to ya both !!!
lori