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New MCAS Diagnosis I have questions though (Read 3973 times)

ShellyHunter

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Missouri

New MCAS Diagnosis I have questions though
11/21/11 at 13:52:36

First, I am a registered nurse so you would think I would be able to figure this out. But sometimes lately I feel like I have the brain of a 3 year old. My allergist has told me I either have mast cell activation syndrome. Well, at first he didn't really clarify if it was that or mastocytosis, but I think he has decided that is what it is, not sure really why. My urine histamine is normal, urine prostaglandins are normal. Total tryptase is 2.3 ng/ml which he also said is normal. I have not had a bmb or any other biopsies. I had 3 very near anaphylactic episodes after reaching maintenance dose on allergy shots earlier this year. My allergy shots actually made all of my symptoms worse so we discontinued them. I have flushing episodes, wheezing, shortness of breath, nausea, occasional vomiting, upper right quadrant pain (especially if I take narcotic pain meds, pain similar to a gallbladder attack but I haven't had a gallbladder for 22 years) dizziness, lightheadedness, fainted 1x, migraines, extreme fatigue, unexplained bruising, bladder irritation, brain fog, concentration problems, muscle and joint pain, back pain, tingling and burning in feet, sometimes hands, palms get red, occasional severe itching usually on legs sometimes on face and arms, sometimes I get hives after itching starts sometimes I don't, tachycardia, blood pressure changes (I have high blood pressure but it frequently drops low), constipation, reflux (I also have a hiatal hernia), I had very heavy periods before my hysterectomy (no bad reactions to surgery), anemia. I think that is all. I have been diagnosed with fibromyalgia, but think maybe I don't have it and it is the mastocytosis because the fibro meds don't work. I have been on high doses of savella along with other meds without relief. I am currently taking zyrtec 10mg daily nexium 40 mg daily, ranitidine 150 mg 2x a day, zofran 4 mg as needed, singulair 10 mg daily, gastrocrom 2 vials 4 times a day, symbicort, albuterol, tylenol, aspirin, benadryl, pantenase, flonase, vitamin d, promethazine, trazodone, relafen, savella, skelaxin, zanaflex, topamax (for migraines not seizures), lisinopril, cardizem, and maxzide, epi-pen handy, scared to use it!! My dr is waiting for a GI referral before he does anything else. I want to get things done. He doesn't really seem to know much. I want to increase my singulair to help with pain, he won't, he says higher doses are dangerous.
Questions:
1. Does it sound like mastocytosis or MCAS?
2. What do I need to ask for next as far as tests or meds?
3. Since starting on these meds I am more stable should I just not worry about further testing and take his word for it that MCAS is what I have?
I feel like he is treating it like it isn't a big deal and it feels like a big deal to me. Since the allergy shots are over I haven't had an anaphylactic attack but I have had some episodes that I have felt really awful and been to the ER once with chest pain and bp problems. I don't know if I am overreacting or what. Sometimes I feel like I am crazy!!

« Last Edit: 11/21/11 at 14:56:38 by ShellyHunter »

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ShellyHunter

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Missouri

Re: New MCAS Diagnosis I have questions though
Reply #1 - 11/21/11 at 17:25:03

Let me clarify the "more stable" I still feel bad most of the time, but I have fewer completely unbearable days. I feel like I need to increase my ranitidine and zyrtec (which I can do on my own except right now I am trying to keep my expenses down because money is extremely tight and medicaid is paying for them except for my copay and that is all my dr will write for) I also feel it would help to increase my singulair. I will ask him about the hydroxyzine, also.

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larken

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Re: New MCAS Diagnosis I have questions though
Reply #2 - 11/27/11 at 03:32:44

Hi Shelly,
I was diagnosed recently by one of the mast cell specialists as having MCAS. My symptoms sound very similar to yours, only I don't experience flushing. I also have test results (tryptase, histamine, etc) in the normal range.

I was diagnosed with fibro 15 years ago, but my symptoms never really fit the complete fibro picture and the usual meds didn't help. The only things that have helped have been fexofenadine, ranitidine, Ketotifen and gastrocrom -- so, mast cell-targeting meds.

In addition to the symptoms you mention, I also had a whole range of food sensitivities that clearly affected my symptoms. Once I figured out my triggers through an elimination diet, I felt better. Once I added the right meds, I felt even better and am able to eat a wider variety of foods without major problems now (though others, like gluten and dairy, I still strictly avoid).

I am certainly no doctor, but it sounds like you are on a lot of meds! You may want to talk with a mast cell specialist about whether it's necessary to stay on all of those if you are being treated for MCAS. If you address the underlying mast cell disorder, you may be able to reduce the number of medications--and, therefore, the chances that you will react in a negative way to some. I react to many medications, like you did to the allergy shots. Importantly, one of my worst triggers is salicylates, the active ingredient in aspirin and also in a whole range of fruits and veggies in varying amounts (other "mast cellers" experience this, too). But again, I am not in a position to give medical advice and you may indeed need all of those.

Larken

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Lisa

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Re: New MCAS Diagnosis I have questions though
Reply #3 - 11/28/11 at 00:15:37

Hi Shelly,

I'm sorry you're going through so much. I wish it were different, but yes, you do sound like a masto patient to me.

You posed a very good and important question Shelly, that needs an answer.

ShellyHunter wrote on 11/21/11 at 17:25:03:

Let me clarify the "more stable" I still feel bad most of the time, but I have fewer completely unbearable days. I feel like I need to increase my ranitidine and zyrtec. I also feel it would help to increase my singulair. I will ask him about the hydroxyzine, also.

Shelly, there are two important issues going on here with you: First is the need to establish what form of mast cell disorder you might have. The only way to do that is through testing. Depending upon the results, they either go further into a BMB and genetic testing or they stop where they are. They also need to rule out any other possiblilities which mimic a mast cell disorder, that of a neuroendocrine tumor being the most dangerous of those possibilities. The other reason for continuing testing is in order to gain more insight so as to know better how to treat you.

You see, Shelly, our doctors are at a tremendous disadvantage with us masto patients. It is a disease still in discovery and they really know very little about it. MCAS is in it's infancy, it was only officially recognized last year! They have ignored its existance for over 20 years thinking that there was only one form of mast cell disorder and so the researchers really know almost nothing about it. Only after they opened up their minds to another form of MC disorder did they begin to see broader possibilities but here's the problem. Doctors need PROOF and unfortunately there is very little proof of what is wrong with the MCs. The measuring of mediators don't say what is wrong, they only show what the abnormal MCs are doing. In order to find out what is wrong, they study the MCs themselves and try to see what is defective. Without being able to see it, everything looks normal! This is why they ignored MCAS for so long, everything appeared normal. Now, research has improved and with each improvement as to the technology or testing they learn a bit more and they are finally seeing that even with MCAS patients there is a genetic defect and so they know that something is wrong, but still, they are up against a tremendous battle finding exact answers. That's the authorities! Our lesser doctors are even more challenged for they depend upon the scraps that the authorities can toss at them. And to make matters worse, each and every patient has their own way of showing their disease. Without better answers, it's an incredible challenge for our doctors to know how to medicate us properly. But without having that knowledge, we continue taking a beating!!

Shelly, don't get discouraged, keep working with your doctor. We have information here and I will gladly send you some if you PM me with your email. Your doctor may not have the most updated information. Your doctor sounds like he's got a fair understanding and is working to find answers for you. You're not stable enough if you are still feeling pretty rotten every day. You may feel like you can muddle through the day, but I don't think that's right. I used to feel like this on a daily basis too, but I'm now back to working full time and dont' go through that horrendous malaise every day! With the proper adjustments of your meds, you can return to a relatively normal, functional life! Very few of us are really totally disabled by our disease. But in order to get to this point it takes TIME and working with your doctor.

I would suggest that your doctor speak with one of the authorities for it sound to me that youre on meds that may not be good for a MC disorder, but also others which may not be necessary or up to par. I'm on singulair 10mg 2x a day and it was Dr. Castells who put me on this quantity. I can't question her expertise and neither could my doctor and my results are tremendous and it's one of my most crucial medications!

So, I think your meds need adjusting still because you should not be going through the misery you go through.

I hope this helps!

Lisa

Don´t forget, there is so much more to life than being sick!

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