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Suspected Dysautonomia And/or Mast Cell Issues...where Do I Start?


tigerbomb
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Hi all! I am new to this forum, and would truly appreciate your knowledge and expertise.

I'm a 30 year old woman, currently living in Philadelphia. I have spent most of my life being vaguely sickly in one way or another. About a year ago, I came across a description of Ehlers-Danlos Syndrome, and realized that it fit me perfectly. It was confirmed by a geneticist this spring. I am finally receiving appropriate treatment for my pain and joint instability (which is awesome). As I've learned more about EDS and networked with other EDS patients, I've realized that my other health issues could be explained by dysautonomia and/or mast cell activation.

In August, I began seeing an allergist/immunologist. I've been having a lot of allergic-type reactions, but my triggers don't show up on an IgE test. He doesn't know what is wrong with me, but at least he admits it ;)The last time I saw him, I brought up the possibility of a mast cell disorder, expecially MCAS. While he isn't personally familiar with it, at least he acknowledges that it exists. So, he sent me for some bloodwork (not sure if it's the right bloodwork), and I'm currently awaiting results.

I've suspected that I have dysautonomia (but not necessarily POTS) for a while, but didn't pursue diagnosis because my joint issues seemed more urgent. Typically, my symptoms cycled in severity with my hormonal cycle, but are rarely debilitating. This month, however, has been much worse than usual, with hardly any good days. It's hard for me to accept, but I know I have to focus on getting this under control.

Here are symptoms that I think might suggest a diagnosis of dysautonomia and/or mast cell disease:

  • Dizziness
  • Nausea
  • Vomiting (rarely)
  • Diarrhea/frequent pooping
  • Stomach pain/cramping
  • Stomach bloating
  • Fatigue (mostly managed with Wellbutrin, Lexapro, and diet)
  • "Brain fog" (mostly managed with Wellbutrin)
  • Hot flashes
  • Chills
  • Motion sickness
  • Tunnel vision/seeing black if I get up quickly from squatting or bending over (not sitting though)
  • Chronic sinusitis and rhinitis
  • Hypoglycemia (managed very effectively with low-carb diet)
  • Increasing number of allergies/intolerances to foods (especially fruits)
  • Allergies/intolerances to meds
  • New allergies/intolerances to weird stuff (wearing earings, contact lenses, etc)
  • Alcohol intolerance
  • Dermatitis triggered by stress and/or heat
  • Intermittent weakness
  • Canker sores
  • Shakiness (occasional)
  • ...and I'm sure I'm leaving something out, but you get the picture

I'm not sure if I've ever fainted. My blood pressure has also been normal whenever I've had it measured, but I've always been sitting down.

I need help figuring out what my next steps are. How do I attack this in the most efficient way possible? I would like to be evaluated for dysautonomia, but I don't know who to see for that. A cardiologist? A neurologist? Should I bring up the mast cell thing, or will it make me seem batty? Also, do you know which diseases they typically want to rule out before a dysautonomia diagnosis? If there are tests that I will need, I can work with either my PCP or my rheumatologist to start scheduling them now.

Many thanks, and be well!

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Hi Tigerbomb--and welcome!

I'm sorry your suitcase of symptoms brought you here, but I'm glad you found the forum--you'll find nothing but smart, concerned, kindred spirits!

To attempt to address your questons, I'll begin by telling you what I imagine you've already discovered--there is no one "correct" answer, no one "right" path and no end to the frustration from time to time..it's a super good time! :rolleyes:

People with dysautonomia typically end up seeking out the physician they need to address the way the disease manifests itself at any given time; for instance, if you present with GI issues, you end up with a GI consult; if you have chest pains and tachycardia, you end up at the cardiologist's office; if you have headaches and dizziness, here comes the neurologist--you get the picture. Although I had ALL of those issues (and many more), it was a cardiologist who finally diagnosed the dysautonomia in conjunction with my MVP, and that was quite a long time ago. It's only been very recently that I've become aware of MCAS and was able to put the last piece of my personal puzzle together--AT LAST! Mostly, I just wandered around feeling mildly to moderately crappy all the time until I found a remarkable immunologist who nailed down the MCAS diagnosis--I was all YAY and WHOOT!! I finally had an answer to my decades of questions...never mind that only a handful of folks in the world really understand it, and the treatment is kind of hit-or-miss! :P

As far as other tihngs that they may test for first, there can be quite a slew of them; personally, I was tested for Multiple Sclerosis, ALS, diabetes, leukemia, lupus (about 400 times) , rheumatoid arthritis, and--my personal favorite--giant brain tumors! They typically like to rule out the scary-but-understood things first before moving into the mysterious-and-vaguely-untreatable neighborhood.

So, I hope this lengthy response helps at least a bit...don't hesitate to speak up if you have other questions...I may not have the answer, but, undoubtedly, someone on here will...at the very least, someone will have been through it before, and THAT is sometimes the biggest comfort of all!

Take care!

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Hi Tigerbomb,

My son has experienced most of your symptoms at one time or another. Like Ophelialit mentioned, people often start with whatever doctor their symptoms are at the time. We started with a GI, eventually got the correct diagnosis from a cardiologist but have been treated by a neurologist. I just make sure the doctor has knowledge of dysautonomia or else it is a very frustrating appointment. We are currently also seeing a hematologist since my son has also now been diagnosed with MCAS to go along with his POTS. My son has never fainted either.

Christy

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Welcome. If I were you I'd look for an integrative / functional doctor in your area. This type

Doctor will look for root causes of chronic illnesses like diet, parasites, nutritional deficiencies, thyroid irregularities, etc.

Mine found what my traditional doctors missed. Things like Hashimoto's, low dhea, low pregnenolone,

several nutritional deficiencies, my tendency to over produce gluten antibodies, hyperinsulinemia, etc

I just started the mast cell protocal 6 weeks ago and I'm a responder. My oi is there but I'm not

forced to lay down most of the day anymore and my energy has improved. : ). We have some great info here on this.

I've been mostly couchbound and on disability for 23 years in Jan and between the Wahls diet, supplements my labs or

doctor said I needed and now the mast cell protocal I'm feeling better than I have in years. Kow.

If you decide to forego the doctor, I'd start with the elimination diet then go to a paleo type diet.

Some people don't do well on grains, legumes or chemicals. My dogs didn't do well on grains either. They were on meds for chronic allergies and skin problems until I switched their diets.

I suggest trying probiotics or better yet make homemade coconut kefir using a good probiotic. Try eating

papaya, mango and pineapple to aid in digestion. Papaya seeds are good too. Or try digestive enzyme supplements or meds. I'm using creon now and it's working well but I'm also a celiac.

I also suggest, based on my experience to treat for candida and parasites in case you have these.

Tc ... D

Edited by MomtoGiuliana
medial advice
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Thanks so much, everyone! I truly appreciate your warm welcome and helpful suggestions.

ophelialit: Oh man...and here I was, thinking you had the secret answer ;) I can definitely relate to the relief of finally having a diagnosis. My EDS diagnosis is truly one of the best things that ever happened to me - I spent most of my life wondering why I was such a weirdo, only to learn that I am actually very typical for someone with EDS. Honestly, just knowing that this isn't all in my head or somehow my fault has been incredibly good for my mental health. In terms of doctors, I've been looking through the forum archives, and it looks like there may be a dysautonomia-savvy neurologist and cardiologist in my area, so I think I know where I'll start. I've already ruled out a lot of the diseases you mentioned (except for giant brain tumor :blink:), so it sounds like I'm off to a good start. Bloom County is awesome, btw.

Christy: Have you found any helpful strategies to figure out if a doctor has knowledge of dysautonomia? In the past, I've found doctors who say they have knowledge of EDS, but when I finally see them, it turns out that their knowledge is 20 years out of date, or just wrong.

Dizzysillyak: Finding an integrative/functional doc sounds like a superb idea. I take an integrative approach to managing this, so it would probably make sense to find a doctor who is on the same page ;) I should have mentioned what I'm already doing to treat this...I've been on a mostly-Paleo diet for over two years now (I still eat some dairy in the form of organic yogurt and kefir, because they settle my stomach when it's cranky), and I agree that it can be very helpful! I also eat a ton of mango, because it tastes great and makes my gut happy (no pineapple, though, because I'm VIOLENTLY allergic, haha). Unfortunately, my symptoms seem to always follow a cycle: I'll experience a flare up, then find a way to manage it (through medication, diet, lifestyle, etc). Then, I'll feel better for a year or two until my symptoms flare again, and I have to add another management tool. So, my life has gradually become more and more restricted over time. It's frustrating, but so it goes!

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Tigerbomb,

The doctors we have seen that are knowledgeable about POTS and MCAS were found on the internet and this forum. We have ended up having to travel great distances to see some of these doctors, but after the horrible treatment my son got from doctors who weren't in the know it is well worth it. I didn't even know there was a local doctor for us until someone on this forum mentioned they were seeing a doctor in St Louis(which is where we live). So this is a very informative forum. We have traveled to Cleveland, the Mayo in Minnesota for POTS and Charleston, SC for the MCAS.

fyi-There is a list of doctors on this website.

Christy

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Your approach to this sounds a lot like mine over the last 7 years.

Have you had a cdsa ? Comprehensive digestive something (haha). I'll think of this later I'm sure.

But if you google cdsa you'll see exactly what it is. Basically, it's a stool test that looks for a list of thing that could be

causing your digestive problems or your chronic illness. Things like candida, parasites, missing digestive enzymes, etc. My understanding is that the metamatrix is the best.

Have you been tested for sibo and h pylori ? These are traditional tests so they should be easy to get.

I love mangos too but papaya works differently than mangos for me. I eat a lot of these when my digestion is

off. Sorry to hear you're allergic to pineapple.

Dairy

could be behind that tho. I'm allergic to dairy and I feel better tummywise from yogurt or kefir.

I just get severe shiners and a little gas. Goat milk was even worse.

Have you tried making your own coconut kefir with a dairy free probiotic like Metagenics, Country Life

or Megaflora ? It's real easy.

I've responded well to taking some mast cell treatments tho. I wish I'd started these years ago.

The only upside to having paid such close attention to how foods affect me is that I felt mostly healthy

at rest and knew what would happen if I ate the wrong food or chemical. Looking back, my diet was

very limitted.

Since going on the mc protocal, I went a little crazy

eating my trigger foods, chocolate, tomatoes, etc. since I'm not reacting to them with pelvic pain. Lol.

Now I'm working on adding new cuisines to my diet instead of my trigger foods or non paleo foods.

I can already tell, it's not going to be easy without getting a negative reaction tho.

For several years I had swelling

everyday and it never dawned on me that I needed to stay on allergy meds vs taking Benadryl

if the swelling got too bad. Duh !

I wish I'd known about the pelvic pain and fibro / mast cell connection too. I could've avoided years

of unnecessary pain.

Tc .. D

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Oh, thanks. I haven't had a CDSA, but was H Pilori negative last itme I was tested. It makes sense to get worked up for everything else too.

Growing up, my mom was kind of a health food nut. She gave me papaya enzyme tablets when I had stomach aches (which was often, haha), but I never found them too helpful. Do you know if fresh papaya might be better?

I'll look into the coconut kefir. I'm a big fan of coconut in general, and imagine it would be delicious blended with some mango.

I've been meaning to do a dairy-elimination trial for a while. It will be easier to do now than over the holiday season, so might as well get started asap! It's also a good time to tighten up the rest of my diet - cut back on even the natural sugars, reduce omega-6 intake, avoid lectins, increrase micronutrients, etc. At the very least I'll probably drop a few pounds and get back in the tight jeans ;)

I'm sorry to hear you suffered for all those years - I really hope that in the future, more doctors will know to look for this stuff.

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I'm sure you'll feel a lot better once you get your digestive symptoms under control. I still

have digestive problems from time to time but it's normally self inflicted now and I have a regime I try

that normally gets it under control. Things like fresh papaya, boiling ginger root and drinking the water, probiotics or trying a different digestive enzyme. I use charcoal as a last resort because it pulls healthy nutrients too.

That's cool that your mother was into healthy eating. Mine was a true southern cook. Think Paula Deen.

Lol.

I never responded to papaya pills either but eating about 1/4 - 1/2 a cup at each meal for a day

or two worked great. I dry the seeds and grate those into my foods too. They taste kinda like pepper.

Avoiding raw peppers and onions helps me too but sometime I can't resist putting these in my guacamole.

Speaking of tight jeans, avacados put fat on my belly almost as fast as Sunbutter.

My life turned around for the better 7 years ago when I first learned how foods affected me. I've learned

most of what I know about living a healthy lifestyle from forums like this, my doc and googling. I was laying

down most of the time until I started the mc protocal. : ) .. Now I'm just trying to find some balance.

Tc ... D

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Yeah, my physical therapist told me that getting my gut back under control has to be the first step too. She thinks that it's draining my energy and impeding my progress. It seems like good advice. So, I'm going to start by eating strict paleo + probiotics for a month, and then add things back/take things out from there. The husband has been warned! I drink ginger tea almost constantly, btw. It's great for my nausea and helps my extremities stay warm. Our similarities are freaky!

I'll swing by the grocery store tomorrow to see if they have fresh papaya. Even if it doesn't help my stomach, at least I'll have a tasty fruit snack ;)

It was great being raised by a healthy eater because it definitely prepared me for a life of careful, restricted eating. Unfortunately, it was the low-fat 80s and my family was vegetarian, which meant a lot of whole grains, legumes, soy, gluten, etc. I didn't like greens because my mom didn't add fat or salt to them. So, I basically ate the worst possible diet for my body. I started eating much more fat and vegetables once I moved to my first appartment. In my mid 20s, I really started taking control of my health - adding fish, reducing sugar and starches, eating even more vegetables, keeping a food diary, etc. I started working out. Eventually, I eased into a paleo+dairy diet and started eating poultry and grass-fed red meat. I guess it's time to take the next step, haha.

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Hi TigerBomb!

I live in the DC Metro Area and there is an Autonomic Specialist Center here in this area, Might be worth the Drive for you it sounds like. 2 hour drive no traffic?

I have been Diagnosed With EDS, MVP, Mast Cell, Dysautonomia. Mast Cell Dysautonomia can vary a bit from the regular POTS version so you really really need to see a specialist in my opinion. Just a basic Cardiologist wont even do from my experience. Of course if they have knowledge in this arena that is awesome, but most of the time they have basic knowledge about POTS, they know beta blockers are good and to drink tons of water, but you start to get into the Mast Cell stuff and it gets a bit hairy....so

Childrens Heart Institute

Dr. Hassan Abdallah

Reston, VA

This is the Center. They take adults and children. just say you have suspected Dysautonomia and your looking for a specialist. I mean they might even be able to refer you to one of there colleagues or affiliates closer as well.

They have like 10 other offices as well but this is the one that does all of the autonomic testing. I am no doctor but your symptoms are so similar to mine I'd hate to see you bounce around from doctor to doctor like I did with no results. This is a very unique sub-specialty and even now after all this time when I try and explain it to my General Doctor you can tell she's kind of like...um...hmm... okay.

She of course believes me completely but it' more that they are just now realizing the body is capable of dysfunction on these more sub-levels and its just so New!!

good luck hope you find someone that understands this!!

ashley

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Hi Ashley, thanks so much for the suggestion! Philly to DC is about 3 hours, but when Mr. Bomb is driving, they're a bit closer ;) Plus, we have some friends and family down there, so we could make a trip of it.

And yeah...I hate the bouncing around. I mean, I'm pretty sure I know what's wrong with me and which tests I need. Unfortunately, most doctors just aren't experienced with treating EDS or MCAS, and they just want to treat me as a disparate collection of familiar symptoms, rather than addressing some unfamiliar multi-system disorder. Sigh. It's also hard to explain to the people around me why I don't just go to a doctor, get diagnosed, get treated, and get better.

Anyway, thanks, and be well!

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