Mast Cell Disorder Support Network

Help! Doctors/Med professionals treating me like a druggie or hypochondriac?

#1

Hi everyone. I’m new here. I have not received a formal diagnosis yet, but am in the testing process. It’s a little unnerving because I have virtually all the symptoms and signs.

The “allergy attacks” started on 6/28. I had a ten day span where I had anaphylactic reactions about four or five times, even without exposure to what we thought triggered the first one, and was in the hospital 8 of those ten days. I even had an anaphalytic reaction to solumedrol, the steroid they use to treat anaphylaxis! I was released on July 8. Following my release from the hospital, I went to an allergist who suspected that I had a mast cell problem and sent me to this specialist about an hour and a half away. He has brought up the mast cell thing as well and is currently reviewing my records and running tests.

On 7/8, I was discharged from hospital on Zyrtec and Singulair at night. On 7/20, the specialist bumped up the Zyrtec to twice a day.

Since being out of the hospital on July 8, I’ve had two more attacks in this 14 day period. The first on 7/11 and I was able to manage with Benadryl. It happened after a kid got into my car smelling like an ash try. I got a bit lightheaded, headache, and that AWFUL burning and stinging sensation all over my body.

The specialist told me the burning is histamines being released.

The second one started on Thursday of this week, 7/20. I could feel light burning and tingling but it wasn’t unmanageable. Friday, 7/21, after exercising for a few minutes, when I stopped, the burning and tingling started getting severe. I was also a little short of breath and started coughing. I took my rescue inhaler and Benadryl. After a while I thought I was in the clear. But like two and a half hours later, I was driving and it hit me full on. Chest pain, unbearable burning/stinging, couldn’t swallow, getting dizzy. I was taken by ambulance to hospital from the side of the highway. My heart rate was hitting 150s, nauseated, blood pressure extremely elevated.

I overheard the paramedic telling the nurse that besides the Benadryl he had given me a placebo to lower my heart rate to see if I was faking I guess? His words were “to see if it was some kind of pseudo reaction.” However when he gave me whatever it was he gave in the IV, I did have more burning in my chest. When I get the Benadryl in the IV in the middle of the flair, it often feels like so much pressure in my chest I gasp for air. Anyway the hospital kept me on Benadryl, zofran, Pepcid, and Ativan (to lower my heart rate) and let me go after like five hours instead of keeping me.

I also got copies of my medical records from the two prior hospital visits. I noted on record says I “have a lot of complaints even though I look fine” and another says rule out allergies, anxiety, withdrawals, and that I was drug tested twice. (Negative of course). Between reading that and how the paramedic handled it yesterday, I’m hurt, irritated, and frustrated. This isn’t “anxiety” or some kind of psychological response. I’m also afraid to eat anything or exercise now because there seems to be no consistent trigger.

After yesterday, hydroxyzine has now been added to the regiment.

Does anyone have any advice they can give me? This is seriously screwing up my life and I can’t live like this. :frowning:

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#2

Hi there Azmia. We’re glad that you found us, but sorry that you had to come looking for a support board. I know some of what you’re going through. I don’t have what you have, but I’ve got severe Psoriatic Arthritis. My disease presented in an atypical fashion, and I went through years (nay, decades!) of being blown off by doctors as OCD (yes, it’s official, it’s on my chart!) and (presumably) drug seeking. It’s a terrible trap to get into, and I’m so glad that you’re not going to let yourself be sucked into that game. You’re “hurt, irritated and frustrated”. Well good for you: I wasn’t. I accepted what the doctors all implied: it was all in my head, I was over-exaggerating, I was drug-seeking, I was lazy, I was a malingerer. They, after all, were the doctors. and I wasn’t. Their assumptions got blown out of the water one day, when irreparable damage was discovered in my joints. I was very ill, as, in my heart of hearts, I had believed. But I didn’t trust my gut.

You know your body. You know there’s something wrong. Please trust yourself, and continue to ask questions and explain until the day you can walk out of the doctor’s office and say to yourself (whether the news is good or bad), “Yes, now that really does makes sense.” When you are at that point, you’ve probably got the right answer.

All the best to you

Seenie from Moderator Support

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#3

Thanks, Seenie. I go back to the doctor tomorrow morning and this is the first time in my life I’m actually looking forward to visiting a doctor. I am wishing it would be tomorrow already. I feel like I’ve been useless all weekend bc moving around or anything that makes my heart rate go up makes the symptoms much worse. I’m basically afraid to do anything at this point - eat, exercise, go outside. The anaphalyctic episodes are so scary for me because my heart rate gets so elevated they won’t even administer epinephrine in a hospital setting most of the time, which makes me extremely scared to use the epi pen by myself when I am alone waiting for help. During one attack, I had two epi pens and my heart rate actually went down, much to the shock of the doctors. I’ve told the other ER doctors about that but they still don’t want to administer it. The burning and tingling has been going on consistently since Thursday. I’m hoping that tomorrow they put me on xolair shots, which is what my pulmonologist suggested.

Sorry to hear about your illness. Glad you finally got that diagnosis though. It must feel like validation. My grandfather had similar issues with something (I can’t recall what exactly the condition was), and he used to always joke that one day it was going to kill him and he wanted “I told you I was sick” written on his tombstone. I now understand the twisted sense of humor because what else can you do to keep yourself from going crazy?!

This unfortunately isn’t my first rodeo like this, but this is by far the most severe. Previously, it took me about two years and two plus surgeries to get an endometriosis diagnosis. I had stage IV, which is the worst, and my pelvis was fused together. No, it was not “depression” as one doctor tried to tell me. Just like this isn’t “anxiety.”

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#4

Bingo. The relief and validation was unbelievable. I was thrilled to be given a diagnosis, even if it came with some grim news and dismal prospects for lifestyle.

Two years with endometriosis! What kind of hell that must have been. I have to laugh about your grandfather, though. So so true!

I was just visiting a friend who has been suffering something unknown for years. They are now going to test her for Lupus, and she’s understandably upset about it. Then I told her that the only thing worse than having lupus is having lupus and not knowing you do. She looked amazed and blurted “OMG I never thought of it that way.” And she actually smiled.

Potentially opening a can of worms here: do you think as many men get blown of by doctors and fobbed off with “depression” and “anxiety” non-diagnoses? Oh-oh, maybe I shouldn’t have asked. :face_with_raised_eyebrow:

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#5

ABSOLUTELY THEY DON’T!!! You also have to love male gynos telling you “It can’t hurt that bad.” I’m sorry, what?! Do you have ovaries and a uterus to tell me how mine feels!!! Tell me about your monthly period cramps, sir.

PS - Currently back in the hospital. The ER doc actually took me serious and I almost cried. I was like thank you because over the past few days, my experience has been xyz. He was like wow, no this is definitely a physical and physiological issue, not a psychological one.

I hope your friend gets better!!! I don’t know a ton about lupus but I know it can really interfere with day to day life.

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#6

Didn’t think so. :wink: So what was the outcome today?

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#7

still waiting. hospital doctor is reviewing my record and calling the specialist bc he’s baffled. :smirk: he wants to discharge me but says I have redness and cobblestoning in my throat which is indicative of an allergic reaction. well duh. :unamused::tired_face:

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#8

Well thank goodness that he’s taking you seriously.
That’s more than you had before.
Keep in touch.

Seenie

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#9

They put me on Valium. :expressionless: Besides three to four antihistamines. Because an off-label use of Valium is to calm laryngeal spasms (hoarseness) and “maybe there’s an anxiety-related component to this as well.” Still in the hospital.

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#10

Sight. At least it sounds as if someone is taking you seriously.

Seenie

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#11

SIGHT!??!!? Could I have meant “Right”?

Sorry Azmia … how are things now?

Seenie

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#12

Hello everyone! Just revisiting a thread from a few months ago. How are you now, Azmia? Any improvement?

Seenie

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#13

I’m new here, and just saw this thread. I wanted you to know you’re not alone!!! It was over a year before I was finally given a diagnosis of mastocytosis, and even now, I am still sometimes treated as a malingerer, EVEN when I present with physical symptoms… wheezing, strider, swollen pharynx, swollen tongue, etc. I don’t know what’s wrong with the medical community. It’s like if someone comes to the ER a certain number of times and they can’t specifically define the problem, it’s automatically blamed on the patient. I just want you to know you aren’t alone. I don’t mean to say that all medical establishments are this way by any means, just that it’s happened to me, too. Best of luck to you.

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#14

Hi! They ended up diagnosing me with mast cell activation syndrome, hyper eosinophilic syndrome, and lupus! I’m on a low dose chemo (methotrexate), another one specifically to kill off eosinophils (Nucala), and an immunosuppressant for the lupus called benlysta. I’ve not suffered any more anaphylactic attacks, but did continue to have strange reactions to things, like propofol. I have to get general anesthesia now usually for any procedures. I’ve also since been diagnosed with gastroparesis which they believe to be from the lupus but it’s in remission. And I had to have seven lymph nodes and a mass removed from my chest; they thought it was lymphoma but it turned out to be lupus. They are still suspicious for a low grade lymphoma bc I keep having persistently enlarged lymph nodes and I have my next scan next month. Thanks for checking on me. <3. How are you?

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#15

Hi! They ended up diagnosing me with mast cell activation syndrome, hyper eosinophilic syndrome, and lupus! I’m on a low dose chemo (methotrexate), another one specifically to kill off eosinophils (Nucala), and an immunosuppressant for the lupus called benlysta. I’ve not suffered any more anaphylactic attacks, but did continue to have strange reactions to things, like propofol. I have to get general anesthesia now usually for any procedures. I’ve also since been diagnosed with gastroparesis which they believe to be from the lupus but it’s in remission. And I had to have seven lymph nodes and a mass removed from my chest; they thought it was lymphoma but it turned out to be lupus. They are still suspicious for a low grade lymphoma bc I keep having persistently enlarged lymph nodes and I have my next scan next month. Thanks for checking on me. <3. How are you?

Oh, and my endometriosis returned (naturally) as adenomyosis, so I’m having a big surgery on 4/10. Wish me luck. But at least people believe me now and my studies and imaging results prove it.

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#16

Hey Azmia and TesserB,
I can assure you that your dealings with dr’s is not uncommon for many of us with rare conditions. We are often given pseudo-science ideas of what it ‘could be’ or ‘might be’.
Personally I have been given more diagnosis than I can count on my fingers (and toes), then when they finally came up with a proper diagnosis, it was as if it was all something new. I’d been telling them for years (Decades) there was an issue but nobody was listening. It wasn’t until I showed up with something life threatening that they ‘fully’ investigated properly and then they came out with a line of “Ohh look what we found”.
I know others have asked is it a male/female problem. I have to say here, it’s not always a male/female problem with diagnosis of hypochondria. Often if our symptoms don’t add up to common ailment some medicos have no idea, rather than admit they don’t know, it’s easier for them to put it back on the patient.

As a society we tend to put dr’s up on a pedestal, expecting them to have ALL of the answers, but when they don’t, they are often reluctant to admit it, so they take the easy route and blame the patients. It often can take some real persistence from us for them to actually investigate appropriately and I’m often suggesting that people obtain a medical advocate, someone who can actually investigate and ask the hard questions like “So, what is actually going on here?” and is prepared to run the tests, do the scans, refer to relevant specialists and find an answer rather than just having a guess.

It ain’t easy and that’s coming from a male who has been on that medical merry-go-round and had every diagnosis from hypochondria to idiopathic in nature to psychosomatic and everything in between, that was until they did eventually find out what was going on. But it was not easy, that I can assure you, but you know your own body better than any dr. Don’t let them beat you down.

Merl from the Moderator Support Team

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