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My story with many questions :) (Read 7268 times)
lynda51
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My story with many questions :)
07/19/11 at 10:46:40
 
Hi, my name is lynda51.  I am continually drawn back to this website in my search to find others that have "unusual" health problems. (That's putting it mildly...right??)
First of all I appreciate the founder and leaders who have taken so much time to put this site together.  I know either you or a family member deals with some form of mast cell disorder.  As overwhelming as it is, you still have taken the time to provide a support group and I just want to say thank you!
My story started about 18 months ago.  Before Jan 7th, 2010 I led a pretty normal life. I was a 6 year cancer survivor.  I walked 4 miles every day.  I had some fatigue, but not like now!  And I could eat food!!  I felt healthy even though I have many health problems.
On that day in January, I was sitting at a sports event when my head starting "crawling".  I grew very weak, had a rapid and irregular heart beat and felt like I was going to pass out.  An ER nurse was sitting in the crowd and she came to help.  She asked for the Defib. unit to be brought and had someone call an ambulance.  My pulse was over 130 and my BP was 240/180. I was taken to a nearby hospital. I had a brain CT scan, an MRI and a multitude of other tests...all of which came back normal.  They released me the next day with an "unknown etiology."  Two days later I was back in the ER again with the same itchy, burning sensation in my face and neck, but not nearly as severe.  These episodes continued for 2 months.  Along with the itching, etc.  I felt like I was fighting to keep from passing out.  They would occur more after meals and when I woke up in the morning than at other times of the day. Then in March, I had a more severe "episode" and was again transported by ambulance.  I have no memory of this trip or my hospital stay.  Once again...an MRI, CT scans, labs and everything was normal.  
During all this time I started reading, studying symptoms, etc.  When I looked back, the first time at the sports event I had eaten 3 pieces of popcorn.  The second time, I had a protein bar. The only common ingredient between the two things was soy based.  I started keeping a journal and EVERY time I ate anything with soy, I had a reaction!  
After my hospital stay in March, I was sent to a neurologist.  She did an EEG and it came back abnormal.  I was put on seizure meds even though there was no definitive diagnosis.  The medication seemed to "calm" my symptoms.  I got along quite well once the meds were regulated and continued to avoid any food with soy in it (a bit of a challenge as some of you may well know).  I also found I was having trouble with any dairy products.
Last December, I was sent to another neurologist who specializes in autonomic nervous system dysfunction.  I was diagnosed with dysautonomia.  As I was leaving his office, I told him about my diet problems.  He suggested I look up the word TYRAMINES.  Wow!!!  About 95% of the foods that made me itch, burn, gave me abdominal pain and severe dizziness were on the "DO NOT EAT" list of either the tyramine or histamine diet.
I have mentioned this to many, many doctors.   I have been to every kind of "ologist" there is and no one can find out what is wrong.  The last immunologist I saw told me he thought I was "allergic to "the process of eating".  Does any of this sound familiar to any of you?  How can you eat something one day and the next day have all kinds of intolerances and reactions?  I have lost over 20 pounds and feel like I am starving to death!  Help!
Oh....my rheumatologist (great Dr.) did a serum tryphase (mine was 3.53)and N-methylhistidine test and both came back within normal limits.  I really thought maybe he was on the right track.  It was his testing that made me start researching mastocytosis and hence I came across this website.
I don't know if I belong here or not, but after reading many of your posts I know you will tell me if I need to pursue this further or if I should be looking at other "ideas" as far as what could be going on.
I am sorry this is so fragmented.  I have permanent brain fog and can't even seem to keep my thoughts together anymore!
I would appreciate any suggestions you might have.  Thank you sooooooooooo much for listening!  I feel so alone!
lynda51
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Starflower
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Re: My story with many questions :)
Reply #1 - 07/19/11 at 17:01:52
 
Hi lynda51,

Welcome to the group!

I'm sorry that I don't have time to write a longer message tonight... it's almost bedtime for me and the kids... but since you've been diagnosed with dysautonomia I have a couple of useful resources for you.  First is an article about mast cell disorders in patients with POTS, which is one type of dysautonomia:

http://hyper.ahajournals.org/content/45/3/385.full

Another thing I've found really useful (maybe you've seen it already) is this website:

http://dinet.org/

The lists of "what helps" and "what to avoid" are great!  They also have a DVD... I paid $10, but I think you can get a copy for free now.  

You could definitely be on the right track thinking "mast cell disorder."  I was 33 the first time I went into anaphylaxis... like you I was wondering what kind of adult suddenly develops severe allergies??  With a normal baseline tryptase you're unlikely to have SM, but you could definitely still have a mast cell disorder (MCAD).  A lot of research is going on right now!  Regardless of your diagnosis, this group is a great place for ideas on how to improve your symtoms and live a relatively normal life Smiley  Ask as many questions as you like.

Heather
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Lisa
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Re: My story with many questions :)
Reply #2 - 07/20/11 at 02:23:56
 
Hi Lynda!

Welcome to the forum and I hope we can give you some answers.

Lynda, if you will PM me with your email, I will send you some important information about the MCAS/MCAD diagnosis that can help you and your doctors.  Your doctors are not recognizing the hypertensive variant form of masto which can shoot our pressure sky high!  My pressure has gone up to 230/110 just from standing still in line!  My pressure has been shot up to 220/110 with contrast injection.  The first was hypertensive POTs and the second a definitive reaction to contrast with a CT!   Mast cell disorders are able to cause a hyperadrenergic response within the body.  It's a self defense mechanism.  The body detects it's going to crash and crash hard and so with some of it, it goes into hyperdrive to prevent the crash and instead pumps all kinds of chemicals into our bodies to shoot our pressure up instead.  Very few doctors know that this is possible!  Only those who are real experts in mastocytosis know about this and it's hard to find the information on it.  This is part of the information I would like to send to you.  With this, you can forward it all to your doctors and it will give them a much clearer vision of what they are probably dealing with.

As to the tryptase levels, Lynda, Heather is 100% correct.  My tryptase is 4.6ng!  My urine histamines are what are elevated.  Most doctors don't know about the new diagnosis of Mast Cell Activation Syndrome and they only know about the Systemic Mastocytosis finding.  So they expect everyone with masto to fall into the WHO criteria and now that they've opened up the diagnosis to include the other forms of mast cell disorders, this means that more of us are finding a diagnosis and thus treatment and doctor support.   But the key is getting your doctors on the same page as the authorities.   Your tryptase being low doesn't rule out masto, for according to the scientists I speak with, a NORMAL person has a tryptase that does not go above 1.0ng.   The reason why the "normal" ranges are from 1 - 15ng is because there are other conditions which will raise the tryptase.  Research is showing that aortic aneurysms will raise the tryptase as high as 2.5 ng.  And if you have anaphylaxis, it will spike it, but then it will come back down to it's baseline.   But according to this scientist who is studying aortic aneurysms, the tryptase of a perfectly healthy person does NOT rise above 0.99 ng.  This is a NORMAL tryptase.  Anything higher than this indicates disease, but what disease is not known.  This is why the authorities for Sytemic Mastocytosis put the abnormal trypatase for systemic masto at 20ng, because once it's above this point, it's the ONLY disease which is known to do this as a baseline reading.  This is why it's diagnostic for mastocytosis.  

Yet, a tryptase of 3.53 in INDICATIVE of masto with those symptoms of yours.  My doctors are testing my children and one of my sons, in whom we have found the MC aggregates (diagnostic for SM) has a tryptase of 2.6ng.  It's really low, thankfully, but because we found those aggregates, we know without a doubt that his tryptase is due to mastocytosis.  The higher the tryptase, the higher the number of mast cells, or as they say, the mast cell burden.  My son's disease is in it's infancy, as is mine.   His diagnosis is MCAS, as is mine.  

Lynda, I would recommend that you write to one of the authorities and ask them for their help.  Dr Akin is an excellent resource and he seems very open to being approached by patients looking for answers.  I think he would respond to an email from you and would be willing to help your doctors find some answers.

I hope this helps! Smiley

Lisa
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hernandez
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Re: My story with many questions :)
Reply #3 - 07/20/11 at 03:57:35
 
Hi Lynda, just read your story. In a wierd way it's comforting to know your not alone.I too was quite normal until 12/10/10 when my life suddenly changed. I am 42, married, & raising 3 children. It always starts the same with me. I get hot, flushed, get hives on my face & chest. I have had raised bumps on my tongue since the 1st episode, last phase is my tongue get thick & my throat closes up. I have had 2 hospitalizations with Icu x 4 days for last one. I work in a Dr's office so for all of the other "shocks", which I call them, I get an Iv push then start prednizone again. I too have had many labs etc., have an IEG over 1500 and all the Docs say and do is put me on more fog meds. Allergy meds 3xday, prednizone with reactions and 3 epi pens.They diagnosed me with idiopathic anaphylaxis and are afraid to test me for anything else due to my severe sensitivity. I am so frustrated. My poor kids have had to be taught how to give their mom a shot when I close up. I can be fine 1 minute then going backward not breathing the next. I just wish I could find a local Doctor who would be willing to study and help me. I live in WPB Fla & cannot find anyone who will guide me on what do as I cannot live in a bubble. Well, thanks for listening & I hope we can support each other. Be blessed, Lisa
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Re: My story with many questions :)
Reply #4 - 07/20/11 at 09:37:25
 
Hi to both Lynda and Lisa H!
Im glad you found the board and I think you'll find some help with us Smiley  I was very much like both of you when I first became ill... flushing, heart palpatations, extreme fatigue and sudden reactions that developed into extreme itching and hives all over me.. There are very few expert mast  ell DRs in the US and only 2 that I know of is Fla... Dr Castells referred us to Mayo clinic Jax, DR Candido E. Rivera, M.D.  I am also going to see a DR who does clinical trials with new meds for mastocytosis, in Orlando, DR Hajdenberg at MD Anderson Hospital. I havent seen him yet but he  has a wonderful rep, I will let you know more after i see him.

For now you both need to document/journal everything you eat daily, how you feel, what activities you were involved in and what reactions you have. Let us know about which meds youre on.. so we can help give you suggestions to take to your family Dr.

It sounds like you are both very under medicated... you are having too many reactions and seem to be in a pattern of it.. that needs to be stopped so you can regain your rest and control over your health and life.

We all need H1 and H2 antihistamines, mast cell blockers (stabilizers), leukotriene blockers, and sometimes proton pump inhibitors..also, most of us are on Zantac 300 mg twice a day (and a 3rd dose if we are reacting).

Lisa H, you need to call 911 BEFORE you have another episode and explain to them that you have an Anaphylaxis disorder and what you will need if you dial 911.. that way, that info will pop up if you dial 911 and you will get the treatment you need faster since they will have that info ahead of time.

You both need to start an ER notebook... your history, meds, reactions, allergies, triggers etc.... TMS has a downloadable file for it at TMS.org if that is easier for you.

You both need to go read about LOW HISTAMINE DIET now and start on it to keep mast cell reactions at a low around you.  OK that is enouigh to start with lol... ask anything, we're glad youre here!
Hugs
Ramona
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lynda51
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Re: My story with many questions :)
Reply #5 - 07/21/11 at 02:22:12
 
I was so excited to receive each of your posts that I ran outside to tell my husband.  I have to admit that by the time I got to him the tears were running down my face  (of course he immediately thought something was wrong) .  I just said, "I think I have some support and help".  Thank you!

Thank you for the website info Starflower.  I have been on the dinet.org website a lot!  It has been very helpful.  I am anxious to read the article about POTS and mast cell connections.  When I did see the autonomic specialist he felt I was doing quite well.  I was at that time,  but then things started getting much worse.  He had referred me back to my own neuro (who doesn't have any patients with ANS dysfunction) so it has been a challenge.  She is great to talk to but tends to want to keep increasing my seizure meds because it helps keep the tachycardia and BP down.
Thank you for you all of the information Lisa. Wow....I had not read about anyone that had the high pulse and BP on your site before.  This too gives me hope.  I find it very interesting that I had a contrast CT scan after my endo and colonoscopy didn't give us any answers (abdominal pain).  After the test was done and they were about to let me go.....I got that same crawly, yucky sensation. They took my pulse and BP and you are right..my BP went up to 165/95 and my pulse was around 120.   Do you think it is the dye itself?  I will send you an email or PM so you can send my the info you talked about.  I do need a lot of help in trying to get my Dr.'s  to at least look at this more closely.  When I write Dr. Akin, what should I include in my information?

Hi hernandez. I am sorry you have such severe reactions and your kids have to be the ones to give you the help you need.  As a mom that has to be very hard.  I can't imagine trying to raise a family and dealing with so many health issues.  I have a feeling you will receive a lot of help on this site.  Hopefully they can direct you to someone in your area to give you a sound plan and I think calling 911 and giving them your information is an excellent idea.  I know one of my biggest fears at this point is to be somewhere where no one knows me and I have an "episode".  I would be honored to support you in any way I can.  I don't know much as far as understanding this disease/dysfunction, but I do understand the frustration and sometimes fear! and I hope I can be there for you as well!  I am sending those blessing right back to YOU!  Take care and keep in touch.  Lynda

Dear Riverwn,  Thank you too for all your information.  I can't believe that there are so many of us that are so similar yet so different in our reactions to things.  I have heard a lot of things about Dr. Castells and Dr. Akin from reading this site.  They must be pretty busy!  Smiley  I was VERY happy to hear that Dr. Castells referred you to Mayo clinic (not sure I understand the Jax in your post).  Is it Dr. Rivera that she referred you to?  I am asking because I saw my PC doc two weeks ago and she sent a referral to Mayo.  They referred me to GI because I can't eat, but they called and said, "We have to many concerns so we are sending you to internal medicine instead".  I would give me great comfort to know there are masto docs at Mayo.  I guess I should ask, which Mayo?  I am headed for the one in Rochester, MN.

I used to journal everything but no one looked at it and it took up so much of my day!  I find that some of my reactions are immediate and some seem to be 1/2 hour later to over an hour or more before they "hit".  I am not sure why that is.  The ER notebook is a great idea.  I will set that up.  I was going to order a med bracelet but who can find one big enough!  haaaa  

I was so desperate, I ordered a book called The Dietary Management of Food Allergies and Intolerances by Janice Vikerstaff Joneja, Ph.D, R.D.N.  I put myself on a low tyramine diet after the specialist told me to look it up and I realized it was causing MANY of my reactions.  After reading some of Dr. Joneja's book, I have also included a histamine free diet as well.....it's those little things that one can miss on an ingredient label that can really be a problem however...like "spices".

I will include my meds and diagnosis in my next post as I think this is getting tooooooo long!

Thank you from the bottom of my fast beating heart.  You are wonderful people!
Lynda Smiley
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lynda51
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Re: My story with many questions :)
Reply #6 - 07/21/11 at 03:18:54
 
Hi Ramona,  

You may wished you hadn't asked about my meds...haaaa

Here is a list:
Aspirin
Wellbutrin SR
Advair Diskus
Nexium
Synthroid
Coreg
Pevastatin
Keppra XR
Aolprazalam as needed

Here is a list of my medical record "assessments" or diagnois:

Hashimoto's thyroiditis with high titer and positive antimicrosomal antibodies (diagnosed at age 25)
rheumatic fever manifested by arthralgias  (age 25)
Serositis managed with steroids (age 25)
MVP of the heart (diagnosed after rheumatic fever), now MVP with regurgitation (after chemo)... now they tell me I will need a new mitral valve in the future
viral meningitis and encephalitis (age32)
Endometriosis followed by a complete hysterectomy (age 35)
Breast cancer (2004) with mastectomy (followed by 8 rounds chemo)....with some "shingles" thrown in! OUCH!
Chronic GERD
Osteoarthritis and osteopenia
Asthma
ANS dysfunction vs. anxiety disorder
hypertension
vitiligo
high cholesterol
atypical chest pain
multiple recent dietary intolerances
progressive disabling limb pain (only when I eat certain things or do to much)

Drug reactions:
Cephalosporins-hives
penicillins-hives
Quinolones-hives
Sulfa-hives
SSRI's-hives and certain ones severe tachycardia


Hope this helps in knowing my background.  I am sorry it is sooooooooooo long and boring!

I promise I will try and learn to keep my posts shorter (it's a good thing you don't call.....I talk more than I write)   Smiley

Hugs, Lynda

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Lisa
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Re: My story with many questions :)
Reply #7 - 07/21/11 at 09:00:08
 
Lynda, don't worry about your posts!!  They aren't long, trust me!! LOL Smiley
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Re: My story with many questions :)
Reply #8 - 07/21/11 at 09:41:19
 
Hey Lynda,
Welcome to the site. I am faily new too, and it has brought great confort.
One thing I noticed about your meds, you are on WelbutrinSR, that is an SSRI, something you indicated caused hives..You might want to check into it..
For sure check into H-1, H-2 blockers ( such as singular, allergy meds and zantac type meds) and carry and epi pen with you and a reactioin plan with you at all times.
Additionally, when you get a colonoscopy/endoscopy, be sure they are doing a correct biopsy that looks for mast cells. Bone marrow biopsy is also a test that needs to be run, same thing , be sure it is test correctly.
Hope this helps...good luck
jen
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Re: My story with many questions :)
Reply #9 - 07/21/11 at 14:30:12
 
Hi Ramona, you seem so knowledgeable about all of this so I am wondering if you think maybe I am undermedicated since my throat is still swollen & its hard to swallow after being on 60 mg of prednizone  since last Friday. Here goes my list..Allegra 180mg 2 xday, Vistaril 25mg 1 xday,Prevacid 20mg 2 xday,imuran 50mg 1 xday, Gabapentin 300 mg 1xday, amitripyline 10mg 1xday, ativan 1mg @ bedtime. Again 60 mg of prednizone for a week now. I also have 3 epi pens and a life alert bracelet. I am always in a fog and these steroids make me grumpy and gain more weight. Dont mean to wine just frusterated.
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Re: My story with many questions :)
Reply #10 - 07/21/11 at 15:35:16
 
Hi Lynda!
Wow, it sounds like youve spent most of your adult life trying to survive one thing or the other, I hope you dont end up having  mast cell disease (youve already went through enough!) But we are all here for you, if you do.

OK first you need to test for the disorders that mimic mast cell disease to make sure you dont have those problems. Once youve done that  you can concentrate on taking control of your illness and tweaking your meds until they are perfect for you.

Jen is right. That list of meds isnt what mast cell meds should look like. You dont need to be on. The only way to control reactions from mast cell disporders is to use H1 and H2 blocking antihistamines, leukotriene inhibitors, mast cell stabilizers and possibly proton pump inhibitors.

Im going to use your own list to comment on what youre taking now;
Aspirin--not good.. most of us are very sensitive to any salicylates and get hives over it--you might want to delete this from your meds--and include meds that have it in them.
Wellbutrin SR-some can take this , more cant.. Many of us seem to have problems with Seritonin and we shouldnt take this type of med.
Advair Diskus
Nexium
Synthroid
Coreg--very bad for us, this is a beta blocker drug and we should not be on beta blockers ever. Beta blockers make mast cell degrade and give us more reactions--also if you go into shock and youre on a beta blocker, you stand a very good chance of the epi pen not working--the beta blocker interferes with it. You cannot stop this suddenly, you must wean off slowly--talk to your DR about it.
Pevastatin
Keppra XR
Aolprazalam as needed --one of my favorites to be chilled out when waiting for a reaction to stop and to not let stress make the reaction worse Smiley

-----------------

To Lisa H, lets go over your meds;
I am wondering if you think maybe I am undermedicated since my throat is still swollen & its hard to swallow
Yes!! Anytime you have trouble with your throat or a reaction, grab the antihistamine that works best for you and take an extra dose!
Lisa H's list
..Allegra 180mg 2 xday,  GREAT med, I love this one
Vistaril 25mg 1 xday, Try twice a day, it has a great effect on that brain fog--talk to your DR. about it.
Prevacid 20mg 2 xday, My favorite is Zantac 300 mg twice a day. it works much better than pepcid but this is ok if you cant take Zantac.
imuran 50mg 1 xday, I dont know much about this one but it looks interesting.
Gabapentin 300 mg 1xday, good for nerve pain
amitripyline 10mg 1xday,
ativan 1mg @ bedtime. Good one to chill out with.

60 mg of prednizone for a week now.
Prednisone is a great med to stop reactions that are continuing in cycles and give you a reset to start again. You can take 5 days of it without having to wean off of it, slowly. After being on it for 5 days, you must wean off  to prevent adrenal crisis.. at a rate of going down in dose 5 to 10 mg every 3 days until you are down to 10 mg--the amount your body normally makes per day, then you can stop the prednisone.. Remember that this med has some huge side effects--like a crazy appetite... getting emotional very easily, gaining water weight (peeing alot too), moon face while on long time periods of it...

OK hope this helps with some of your questions!!
Hugs to you both
Ramona
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Re: My story with many questions :)
Reply #11 - 07/21/11 at 15:39:25
 
CORRECTION
The above should have read like this;
After being on it for MORE THAN 5 days, you must wean off  to prevent adrenal crisis. (regarding Prednisone).
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