I became very ill in 2006 with a lung infection/valley fever that caused anaphlyactic shock twice which was possibly due to an allergic reaction to the infection. I had a rash for almost a year after.  This bug wiped my entire immune system out for 2 years that kept me mostly home bound and extremely ill. Although, the antibiotics helped somewhat I continued to be extremely ill.  In 2010, Mayo Clinic diagnosed me with dysautonomia/autonomic neuropathy;which basically means my autonomic nervous system is damaged. So my autonomic system is dysfunctional like temperature control, fight or flight, digestion and so on.  It makes me quite ill most days.  Mayo has told me there is something missing from the diagnosis and only time will tell.  If we can find what is causing my triggers, since the usuals are not showing up...thank heaven for that because they are not good, but if we can find out what is triggering this, my autonomic system would possibly calm down a bit.  I did have some form of dysautonomia growing up with fainting occasionally, also had a very sensitive immune system, but nothing that really knocked me down, except every five years my blood pressure would drop so low that I would have to be hospitalized and sometimes had grand mal seizures, but got up the next day, like nothing had happened. But these episodes were scary and was told I was very close to death on occasion.  I always had a lot of allergies.  I became allergic to my shots in 1995 or so.  I was diagnosed with fibromyalgia in 1993 after having bouts of severe neck pain and migraines.  Anyhow, I continued my life as usual and nothing slowed me down till the Valley Fever. Since then, I have a lot of flushing, panic, am allergic to everything, nausea, daily headaches, gastro-paresis, occipital neuralgia, anemia, the fibromyalgia is doubly painful now, orthostatic intolerance, occasional joint pain and bruising, the list goes on and on.

I joined a dysautonomia blog 2 years ago and the moderator wrote me a note and told me that she's sure I have something called MCAD? I looked up the symptoms and didn't really have the rash issue or anything like that, so I didn't think it was likely.  Anyhow, I belong to a different blog for my neuropathy issue and now I am getting the same messages from several people on the blog, to check into a mast cell disorder.  So I thought, I better check into it.

So here I am.  I'm not even sure if this is my issue, but wanted to see if I could get some direction from people who deal with this.  I went to the allergist and he didn't seem to really know about MCAS? or MCAD? Not sure what the proper name is.  He did a tryptase and the normal range was 1-10 and mine was 11.  He said to not worry about it.  I was well at the time of the test, if that makes any difference.  But I went to the ER a few days ago because I had some type of reaction to something and I was dry heaving all night and in the bathroom, I had dialated pupils, blotchy skin and my blood pressure stayed at 146/88 most of the night.  Of course by the time I got to the ER I was fine. I have this happen quite often, but this was more intense than usual.  But then it happened again 3 days later and went to Urgent Care, my temp was 101 and I had no idea.  It's been between 99-100 the past few days off and on, but today nothing.  Yay. This fever doesn't feel like the average virus, but more like just an over active immune system.  I can literally feel every cell in my body vibrating when this happens and it's terrible and then I have flushing.  But the most important issue is, I'm having neurological reactions to all medications.  I have to take a 1/10 of a baby dose of anything.  So I might not even be in the right place, since even the 1/10 teaspoon of children's Benadryl which I took today made me feel very strange and sweaty, but it helped me to sleep and to calm my system down.

Okay, nice to meet you.  Thank you for listening to this very long and boring story.  I wish you all health in 2012.

Ditto what Lisa said!  I'm off to teach some students about study skills this morning, so I'll drop back here this afternoon to give you some ideas!

Hi Maiysa,

 Welcome to the forum, but sorry you've been having these problems.  It does sound as though you might have a mast cell disorder, but there are some other illnesses to rule out, if your doctor hasn't already done so.  Those would be carcinoid syndrome and pheochromocytoma.  There are specific tests for these.

  It's always best to see a mast cell specialist in order to get a clear diagnosis.  If you can post where you live, people on the forum might be able to recommend someone nearby.  The top experts are in Boston, Dr. Cem Akin and Dr. Marianna Castells, at Brigham and Womens Hospital.  However, there are a few other doctors who diagnose and treat this, too.

  If Benadryl is helping your symptoms, keep taking it and increase your dose, slowly/  Many of us have to start at a very low dose of medicines and increase very slowly until they get to an effective dose.  Most of us also take H2 antihistamines, such as Zantac or Pepcid.  H1 antihistamines that are commonly taken by MC patients include Benadryl, Zyrtec, Allegra.  Don't add or change medicines, though, without consulting a doctor, because you don't want to trigger a bad reaction.

  Some of us follow the low histamine diet, which also helps with symptoms.  If you Google it, look for the one on the ICUS website.  It's easy to read and follow.

  I know others will chime in tomorrow.  It's late now, though......

HI Anaphylaxing!    Yes it is me from the dysatuonomia forum. I'm still looking for answers.  I am going to copy all of your recommended tests and try to find a doctor to order them for the next round.  And Hello Joan, thank you so much for your reply.  I will make a new post to ask if anyone knows of a doctor within 5 hours of Las Vegas.  Thank you so much for your recommendations as well.  I really appreciate everyone's help.

Hi Maiysa!

I hope that we can help you gain some direction and help here for it's obvious you've been going round and round for a long time and it's time to find some ANSWERS!

Maiysa, your symptoms do indeed sound like a mast cell disorder.   The thing about MC disorders is that they are very, very slow growing and due to that, it often is the basis for many other symptoms that take years for doctors to connect to the real cause.    There are case reports of masto being discovered connected to cases of epilepsy and other neurological disorders.   When I went through a neurological investigation into epilepsy last year, the neurologist who investigated me told me that masto has been seen involved in this, but they don't know the connection.   The neurological side of masto is poorly studied and thus poorly understood, however, there are loads of masto patients who complain of neuropathy and many other neurological difficulties, so your having grand mal seizures and neuropathy is not unfamiliar to me.   However, I doubt many doctors would recognize the connection and this is your problem!

Also, the fact that you find that you go through crises upon getting a virus or something is typical of the behavior of a MC disorder.    Mast cells are essencial to our body's defenses.  They are put into action in order to defend your body but the problem with a masto patient is that our mast cells are ain constant action so when they are forced to go into more action due to a virus or infection, this puts us many of us into anaphylaxis or extra reacting.    I just had a viral infection of Coxsackie virus and I took a real beating with it.  Not only did I have a case of more severe sores in my mouth, but the fever and the extra reacting put me into anaphylaxis and fainting one day and I was constantly on the edge until the virus began to abate.   Now, my body is tired and I find that although I'm no longer on the edge of anaphylaxis, I'm easily worn out by normal duties and this being easily tired then puts me on the edge of anaphylaxis!   So, when we get a virus, a cold, flu, or whatever, or an infection, this makes us have to be extra kind to ourselves and pull back from our activities and avoid all known triggers and foods which cause us to react in order to keep from going over the edge into a crisis.   It also means increasing our medications so that they can compensate for the extra degranulating that is going on.   Out body needs to do it's normal job, but that normal job is what puts us into anaphylaxis and crisis events.   So in upping your meds and spacing them closer together, you keep out of trouble and the ER.  


Now, Las Vegas....!!!         Sorry, Maiysa, there is NOBODY in Las Vegas who knows masto, at least that I'm aware of.   We've had a patient here in the past who was looking for someone there and they came up empty handed.

The closest expert in mastocytosis near you is at Stanford U.  Dr. Jason Gotlib.  However, he will not diagnose patients and will only take patients with proven Systemic Masto.    Joan is one of his patients.  

I really don't know of anyone on the West Coast who is really knowledgeable in masto, and the problem you face is without any testing yet, it's hard to know what direction to send you.    You see, we patients are facing a dilema because for the past 20 odd years researchers have totally ignored what is now known to be Mast Cell Activation Syndrome, and have concentrated their efforts only on the proliferation/clonal form of the disease which is called Systemic Mastocytosis.   So, what has happened is that the vast majority of doctors out there have never heard of MCAS and don't recognize it.   So if you go to get tested for a mast cell disorder and have a tryptase level which comes back in the " normal"  ranges, they will openly say you don't have mastocytosis.   Well, in some ways they are right, you may not have mastocytosis, the clonal/proliferative disease, but you may have MCAS the activation disorder of the mast cells.  

But to find a doctor who can recognize and diagnose MCAS there are only 2 experts in the US who can do this,   Dr. Mariana Castells in Boston and Dr. Lawrence Afrin in South Carolina.  

We can tell you of the basic testing which you can do and if you have good doctor support who don't mind ordering you some tests, we can tell you which tests to ask for and do and then your doctors can run these.   However, if they come back negative, which sometimes they do, it still won't rule out a mast cell disorder.   We have many patients here whose tests have indeed come back negative but in their going to either Dr. Castells or Dr. Afrin they were able to get a diagnosis of MCAS.

So, if you want, we can help you and guide you but you may still have to travel if you are going to finally come to an end of this search for answers.


I hope I haven't discouraged you, for I know how hard this is to face, but when you are dealing with a rare disorder, and it's the thing which is behind all of your symptoms, then sometimes this is just what you have to do!

I hope this helps!

Lisa

I agree with Lisa that it's important to get the opinion of a mast cell disorder expert.  However, if you can't travel but having a willing doctor who is open to consulting an expert, I have heard that Dr. Castells and Dr. Afrin will consult by phone.  Some patients contact them directly through email.

What you would hope to get from a consultation would be what additional testing you need, possibly a review of the tests you've already had done, and a plan for medication trials to get you feeling well enough to travel to see them.  If a bone marrow biopsy is suggested, then you would want to see a hematologist.  The staining on those is very specific, and it can be inaccurate if not done by a specialist or someone who has close contact with one.  I had mine done by a capable hematologist, but the lab that analyzed it made errors and omissions, and I had to have it re-done.

Let us know how you're doing and if you find a way to get the work-up you want.

Malysa,

I wanted you to know that I have dysautonomia also. I have also had numbness on areas of my face, soles of my feet, palms of my hands and now back tingling..like a mild electric zing. I have had one phone conference with Dr. Castells and am setting up a new one soon. At times I think the antihistimines seem to help but I am not certain. I can't take very large doses of anything or react badly. I have always had migraines but when everything else started I began to get daily head pain. My face, scalp , and head becpmes so sore to the touch. I know I don't have much advice as I am learning too. The support of everyone on the forum is helping me stay more positive. Hang in there!

Hi Maiysa,

So sorry to hear all you have gone through! I do have some possible good news for you, though. I just came back from UC Davis, where I saw two doctors who know about mast cell disorders, and I know there are at least three more. I originally found them by doing a search on doctors, mastocytosis, and California. Several of these doctors participated in a paper called Mastocytosis, the Great Masquerader (http://www.ncbi.nlm.nih.gov/pubmed/16461996) and Contemporary Challenges in Mastocytosis (http://www.ncbi.nlm.nih.gov/pubmed/19639428).

I was supposed to see Dr. Eric Gershwin, who is one of the authors on these papers. For some reason, he was not in, but I saw Dr. Fatima Ali, who is an intern, and another doctor who was supervising, and only ran in briefly.

Anyway, Dr. Ali was VERY friendly, interested, and seemed quite knowledgeable. She talked to me a lot about what medications I am taking, and much more about how much I could safely take, and what concerns there might be. She went over the use of the Epipen much more thoroughly, not so much HOW, though she did do that, but also when. As I am a leaker (don't often have anaphylaxis), I have been very confused about when I should use it.

She knew about the new WHO criteria, and also about the proposed MCAD criteria, though they are not as big into the MCAD there. Doesn't mean they wouldn't treat necessarily, just they called my issue idiopathic for now. They were very emphatic that I do need treatment! Also, that even with my lower tryptase, that I need a bone marrow biopsy, as my GI biopsy shows signs, but the report was not clear enough to give an absolute diagnosis.

So, the doctors at UC Davis who know enough about masto to be involved in research are M. Eric Gershwin ( http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=297&searc... ),  Rosemary Hallet (  http://www.ucdmc.ucdavis.edu/search/faculty/biodetail.asp?bioid=881&searchtype=&... ), Suzanne Teuber ( http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=474&searc... ), and the internist I saw, Fatima Ali (allergy and Immunology).

The local PNW support group also gave me the name of Natalyia Kushnir in Berkeley. ( http://www.allergynk.com/index.html ). I did write to her to ask if she knows about MCAD, after calling the clinic and talking with their reception. The receptionist told me to email the doctor, and even gave me her email, but I never heard back from her. I may try again, as she is slightly closer than UC Davis, for me.

The docs at UC suggested I find a local hematologist, and talk to them about doing the bone marrow biopsy, so I woudl not have to travel.  They even think a hematologist would know enough to be able to follow my treatment. I will have to see if that is true. However, they are well set up to do the testing at UC Davis, and would have me back if that is what I choose. There is also Dr. Gotlieb at Stanford, if I got an actual diagnosis based on the bone marrow biopsy.

So, Maisya, these may be options for you. Of course the east coast doctors are the top experts, but if it is not possible for you to travel, as it has not been for me, this info may help. I feel much more secure, after speaking to the UC docs, that I will be able to get an accurate bone marrow biopsy, with the proper staining and tests done on it. It can be so frustrating to find out tests have not been done correctly!