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Testing for Masto and MCAD at MD Anderson

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Questus, Jan 3, 2013.

  1. Questus

    Questus Senior Member

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    Haven't been on PR in a long time, have been using my online time to research hyperadrenergic POTS and treatments.

    There's a new paper published by Mayo Clinic, and it has an interesting mention of MCA in a subtype of POTS, which is Hyperadrenergic POTS, and it also has a subtype. Those with a norepinephrine level over 600 are considered hyper-pots, and a very few people have a norepinephrine level between 1000 and 2000. It is that subset of hyper-POTS patients that Mayo believes have MCA. My norepinephrine level is over 1400.

    The paper is interesting for anyone with POTS. http://www.mayoclini...0896-8/fulltext

    Have seen Dr. K on a number of occasions and due to having CFS, POTS and another illness with a strong mast cell component, and significant symptoms including facial flushing, nausea, vomiting, osteoporosis, bone pain, etc...She suggested on two occasions that I be tested for mastocytosis.

    It's not as simple as having a tryptase and a plasma histimine test done. I've been doing a lot of research on the topic, and there are several excellent mast cell forums that have an enormous amount of good information and people who are very, very knowledgeable about both mastocytosis and MCA as well as several syndromes/diseases with mast cell components.

    I found the name of a mast cell researcher and doctor who is an oncologist and hematologist at M C Anderson Hospital. In order to get an appointment I had to send all my test results for him to review before he would agree to see me.

    I have an appointment with him next Thursday, and hope to get to the bottom of this issue and find a way the best way to treat it.

    Because this doctor is also a researcher, I hope to learn more than I would from the average M.D. and will share what he has to say about mast cell issues in CFS, POTS and other diseases.

    Glad to see Mast Cells being talked about with CFS. In a post long ago I said something to the effect that mast cells will prove to be a big part of the CFS picture.

     
    leela, ukxmrv, SOC and 3 others like this.
  2. camas

    camas Senior Member

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    Hope your appointment and testing go well. Will be interested to hear what you have to report back. Thanks for posting that paper.
     
  3. Questus

    Questus Senior Member

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    Thanks Camas,

    I'll share the process.

    If it was only as easy as having a tryptase, plasma histamine and bone marrow biopsy done, it would be easy. Not entirely like CFS but similar in that mast cell testing does not always reveal a mast cell disorder. It's complicated.

    Would encourage anyone with an interest in this to look at many sources of information.

    The websites and forums with people who suffer from Masto and MCAS are on the web, and the stories show an interesting overlap with CFS, POTS and many other syndromes and diseases. It's a web.

    Like the game 'pick up sticks', it's hard to move one stick without the other sticks crashing. Challenging to people with mast cell issues.

    Am glad to see PR and people here diving into this particular topic, because while I don't think it's the 'source' of the CFS/ME illness, I believe that treating mast cell issues will improve a lot of CFS and POTS symptoms that many of us deal with. Not all, but many of us with to a different degree.

    CFS, POTS, Masto, MCS are all 'spectrum' illnesses, and we're all at varying ends and midpoints in the spectrum of the syndromes/diseases that we each have.

    So if you don't have mast cell issues, godspeed. Am not suggesting that everyone with CFS or POTS does. But for those that do, I recommend researching the web, and if you have symptoms that resonate, or in my case have an immunologist tell you point blank...Look into mast cell disorders.

    Am very hopeful that treatment can improve CFS and POTS symptoms as well as the mast cell disorder if indeed I have one.

    Hope your day is a good one.
     
    SOC and merylg like this.
  4. searcher

    searcher

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    Questus - I would love to hear what you find out. My standing norepinephrine level was 1258, and I have a lot of mast cell symptoms. My plasma and urine histamine and tryptase were fine, not surprisingly.
     
    Questus likes this.
  5. camas

    camas Senior Member

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    It is complicated. I have a clinical diagnosis of TMEP Mastocytosis based on the morphology of my many skin lesions, but my two biopsies showed nothing. Then I read just yesterday that they recommend using a giemsa stain to show mast cells, but according to my insurance billing the pathologist used the wrong set of stains...twice. So it's certainly worth seeking out the experts when it comes to testing.

    Would you be comfortable sharing Klimas' views on mast cell activation in ME/CFS, or did she share these with you?
     
  6. Questus

    Questus Senior Member

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    Searcher, you have a standing NE of over 1200. May I ask if you've been dx with a form of dysautonomia or POTS? And/or and do you have difficulty sleeping at night with an NE that high? Am not up to date with posts and apologize for not being up to date on your dx and history. But can't help but be interested by your high NE and how you came to learn about it?

    Camas, it is complicated. I don't have skin masto, which is the most common form, but I do know that many cases of masto and mcas are complicated and not easily diagnosed or treated.

    Dr. Klimas' views on everything from CFS and mast cell issues are directed to the individual patient, the way that patient presents, and their test results. I had multiple consultations with her, and yes, she did share her thoughts with me, but because each person is at a 'different end of the spectrum' in terms of immunologic and neurologic issues including mast cells she customizes her comments to the individual and not the mass. As well she should, and hopefully most good doctors try to do.

    But yes, she is candid and did share her thoughts on mast cell activation specifically in my case and also in tandem with her thoughts on CFS collectively.

    It was very clear that this topic is part and parcel of her neuro-immune approach.

    Talking with Dr. Klimas is easy, but be prepared to take very good notes. She's like an expert musician who can pick up any instrument and play it perfectly, and afterwards you find yourself trying to hear the flute in the background. Quite simply, she's a genius.

    Do I think masto and mca is front and center in her mind with CFS patients? I think she listens carefully to the patients, looks at data and testing and then speaks to the data. If mast cells are a part of the picture, then she speaks to that.

    I have a good friend, (she and I used to see Dr. Cheney for over a decade during the 80's and 90's) and she's seen Dr. K several times and mast cells didn't come up in her visit, if that helps answer your question.

    So each person with CFS is different. And she makes it clear that this is a 'spectrum disease' and some patients are at one end, others at the other end and many somewhere in between.

    Good luck with your mast cell issue. I hope you've been able to find a good doctor who specialized in mast cells?

    Best...
     
    merylg and camas like this.
  7. searcher

    searcher

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    Hi Questus-
    I have been diagnosed with POTS but no other type of dysautonomia. I participated in a research study at Vanderbilt two years ago once I realized I wasn't getting much information from my local doctors. I ended up with a lot of data from my 10-day visit but not much in the way of next steps. The doctors there said they were surprised my heart rate wasn't higher considering how high my norepinephrine was-- my hr went up 30 points in 10 minutes and 50 points in 20 minutes, but my resting heart rate was in the mid-60s so my max hr was relatively mild for POTS. I have had problems with sleep on and off and used to wake up at 3 am often, but recently have been able to sleep through the night most nights.

    I spoke extensively with the research team (a benefit of participating in research studies) but for some reason mast cells never came up once. I don't know why they haven't followed up on this angle considering they posted good research on mast cells several years ago.

    I have a friend who is a hematologist/oncologist at MD Anderson but he isn't knowledgeable about mast cells. Would you mind sharing the name of the doctor who you are seeing, either here or by PM if you don't want to post the name in public?

    Please let me know if you have any additional questions.
     
    Questus likes this.
  8. camas

    camas Senior Member

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    Thanks for sharing your experiences with Klimas, Questus. It's encouraging to hear that she's considering mast cell issues in her patients.

    My D.O., who has been treating my ME/CFS, FM, IC, MCS, etc. for the last 10 years, had never even heard of Mastocytosis until I was recently diagnosed by the dermatologist. I've been researching like crazy for the last few months and sharing my findings with him. He's going along with it, but is feeling about as overwhelmed as I am.

    There is a masto specialist at OHSU I might consult after getting through my last round of dental work in February. If I could travel, I'd opt for Dr. Afrin. He seems to be the most knowledgeable.
     
    Questus likes this.
  9. acer2000

    acer2000 Senior Member

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    Whats considered a normal norepinephrine level in someone who doesn't have POTS or MCAS? I ask because I was tested for norepinephrine (and other catecholamines) a while ago by an endocrinologist who was looking for a pheochromocytoma (a catecholamine producing adrenal tumor). He said I was "normal" so he ruled it out. But now I am interested in getting worked up for MCAS, so I want to compare "normal" to what the level is indicative of MCAS. Or so not all cases of MCAS have elevated NE?
     
  10. Questus

    Questus Senior Member

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    My understanding on the doctor I'm seeing at M D Anderson is that he's 'closed to new patients'. I sent over 20 pages of Immune studies...T cell, B cell, NK cell, and cytokine data. (My results are a mess!) Very few doctors would be able to understand this data but a hematologist obviously can. So can the immunologist, but few other doctors.

    I was being essentially 'interviewed' for this appointment. In addition to the immune data, I sent data from the cardiologist I see along with my history.

    So after I see him this Thursday and hear what he has to say, and go through any testing he might order, then see him again...After all that, I'll see how I feel/think and will go from there before I share his name etc...

    But I do read a lot of masto web sites and forums, and I know of a patient who has a diagnosis of MCAD and was not able to get in to see him. She also sent a lot of data. She was a nurse before she got too sick to work and told me how 'lucky' I was to see him. So, shall see.

    Have been in communication and talked on the phone to people who've been to see Dr. Afrin and has a firm dx of MCAD, and yet they still struggle with medications. It seems to be a constant tweaking of medications and doses. Just getting a dx doesn't end the struggles they're having! (People don't have enough great things to say about Dr. Afrin though.)

    I don't have the energy or cognitive focus right now to post on forums much, but am trying to read as much as I can, and have found that to be the best way to learn about mast cell issues in general, and also specific issues. They're are lots of larger forums, but also some small ones on yahoo that are worth reading.

    Some of it is tedious, (I keep a separate window open on the computer to look up medical terms, medications, etc...LOTS of data out there.) For anyone seriously looking at this topic, I'd recommend reading more on the web.

    Acer, a normal NE in someone without hyper POTS is pretty low. You can look this up on a chart. Someone who is positive for hyper POTS according to a brand new Mayo paper has to have an NE of 600. They put those with an NE between 1000 and 2000 into a very very small minority of patients and say those are the ones they suspect with mast cell disorders.

    Searcher, from the people I've talked to who have POTS and MCAD and who have been to Vandy, they tell me Vandy is VERY aware of mast cell disorders, and it's 'part and parcel' of their research. I've read a lot of papers that come out of Vandy on POTS, and mast cells are certainly an aspect of their concern, particularly in hyper POTS.

    I have lots of papers 'bookmarked' on POTS papers from Vandy, Dr. Grubb and Mayo...And particularly ones on hyper POTS, and they ALL talk about MCAD.

    Something has gone haywire with this PR page, and I can't see my post to edit it, but will post anyway, and hope it's of help.

    Will share more after I see the mast cell specialist. Hopefully, it will help.

    Btw, most people 'self-medicate' with H1 and H2 blockers before they get a mast cell diagnosis, although that's not in my nature to do. But there is a tremendous amount of information out there for people who feel certain they have mast cell issues, and don't have a doctor to help them.

    Good luck and wishing everyone godspeed in your quest for wellness and better health.
     
  11. camas

    camas Senior Member

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    I wish you well with your appointment this week, Questus. Good to hear you found such an experienced hematologist to review your case.
     
    Questus likes this.
  12. Questus

    Questus Senior Member

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    Last edited: Jan 13, 2014
    camas likes this.
  13. searcher

    searcher

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    @Questus- Check out http://www.cdc.gov/cfs/symptoms/index.html . In their overview the CFS states that "CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions." Hope that helps!
     
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  14. searcher

    searcher

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    so glad I could help!
     
  15. Questus

    Questus Senior Member

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    Thanks again Searcher,

    It might be asking too much! Years, (decades?) earlier the CDC issued this same information in a very different format.

    It was initially addressed to patients with CFS and to doctors and family members of same.

    The exact same information was written in a letter' format, and was short and concise and was directed at how debilitating this disease is, without other information. It was exceptionally compelling.

    It's asking a LOT to ask if anyone can find this original formatted CDC document...A 'letter' written for CFS patients to share with family, friends and doctors.

    My 'blueberry Mac' Laptop (circa prior to 2005?) that it was saved on was destroyed when a Katrina dog we were fostering destroyed it by ripping the internet port from the laptop. Difficult to repair! He did lots of damage.

    Kind of like searching for a needle in a haystack, and I'm sure at least one person has it bookmarked or saved on a computer, but may not even realize it. I understand this is not the forum to ask for it, but if anyone reads this and is familiar with the document...I'd sure like to find it.

    Searcher, thanks again. Just having that one sentence is great!
     
  16. Questus

    Questus Senior Member

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    .
     
    Last edited: Jan 13, 2014
  17. August59

    August59 Daughters High School Graduation

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    Felt the same way when I had my vasectomy. I could of swore that bown paper bag was a huge grocery bag.
     
  18. Ocean

    Ocean Senior Member

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    You say obviously you have MCAS, is that what the dr. diagnosed you with? What was it based on? I believe I have that but have not been able to get an official diagnosis.
     
  19. stayhealthy4

    stayhealthy4

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    My urine methyl was 168 not over the 200
    good and my tryptase normal
    but my norepinephrine was 845 standing, how do they diagnose the mcad/mcas? I am having hard to breathe,wheezing now around perfume, smoke, when I drink alcohol, and mosquitoe bite now causes to swell up at the bite to around 2 inche bright red diameter, you would think a poisonouse spider bit me!
     
  20. camas

    camas Senior Member

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    Hi @stayhealthy4,

    Perfume, smoke (of any kind), and alcohol are three of my major triggers, so I can sympathize. I've attached Dr. Afrin's paper on how he diagnoses MCAS. It's kind of a dense read, but there are tables at the end you can skip to that summarize everything.
     

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