ForADiagnosis524

Update: seen in the ER today for SOB and chest pain, tested the POTS theory and my heart rate jumped from 90 to 130 just after standing for a few seconds. Still want to tell me nothing is wrong?

7 hours ago, angelloz said:

Perhaps have your doctor look into Mast Cell Activation Disorder. Ask about having your tryptase checked when having a reaction. In needs to be kept cold and they won't go through all of the process in the ER unless you have a script from your doctor. Just my thoughts of things to address with your doctor.

Thank you, I will have him sign a waiver saying that this needs to be done the next time I am in the ER! And that is actually what he was just testing for, but the first of 4 possible labs he could've ordered came back negative. I'm wondering if my medications could have affected that?

14 hours ago, KiminOrlando said:

Let me preface this by saying that I am not a doctor and not giving medical advice. Having said that, I have heard of something called Hypersensitivity Reaction to Corticosteroids. Google it and see if you think it sounds familiar and, if you do, specifically ask your doctor why he ruled it out. My understanding is that it is very rare, so they may have either forgotten about it or ruled it out already. I don't know all the details of it, so it could be that it doesn't apply here. I'll leave that to you and your doctor.

https://www.verywell.com/steroid-allergy-83058

Click on the above link and scroll down to the part about oral and IV steroids. It talks about IGe testing (which maybe you had) and T cells. At least you will be able to go back and ask intelligent questions.

I'm sure there are other things it could be. Did anybody draw blood and check your ANA for autoimmune diseases? With so many autoimmune diseases, maybe one of them can do this. 

Hopefully you find out you are just allergic to something easy to eliminate from your life.

Good luck.

Kim

@KiminOrlando, Thanks for that information, I will ask my doctor because that definitely seems to be what started it! With this last dose, I remember feeling pretty crappy and having trouble breathing right after taking my medication, but it was also around the time that I ate. While I could've been reacting to the steroids then, I don't really know what the continual reaction is to this time. 

And no, no one has drawn for these specific labs. I also have not had a CBC or CMP done since these new problems began in January.

I'm hoping it's something simple, but it's not seeming that way right now!

18 hours ago, BuffRockChick said:

I am awaiting diagnosis myself.  I didn't notice anything abnormal with my heart rate, although I'd known I "have bad circulation" and "am out of shape" (a.k.a. Exercise intolerant).  However, after reading about POTS while trying to dig up every possible reason why humans feel fatigue, I tried a "stand test".  

Lie down on your back for 15 minutes without moving.  Stand up.  Take your heart rate after 2, 5, and 10 minutes - best if you have a tracker so you don't have to move.  A sustained increase of >30 bpm or over 120 bpm within 10 minutes suggests POTS.  Keep in mind that POTS is a syndrome, which means it's a cluster of symptoms that has more than one cause.

I never noticed my tachycardia because I did't stand that long.  Ever!  I'm often dizzy while standing/walking and I've fallen or collapsed plenty of times, but I actually blacked out after an at-home stand test!  Be safe! 

I'm waiting for an appointment with my PCP.  I sent them an email to give them heads up about my tachycardia with standing and they scheduled pre-appointment bloodwork.  I'm hoping for answers too!  I was misdiagnosed in 2004 with a psychiatric condition, and several doctors over the years have added more and more [mis]diagnoses to the list.  I was too young and passive to know better.  But jeez, if my mood changes **when I stand up** and it's gone within minutes of lying down with my feet up, and medications and therapy for mood disorders have no effect.....  I'm pretty sure it's not a mood disorder.    

Hang in there!  Getting answers and relief will be worth the struggle.  I'm sorry the last few months have been so painful and scary for you!  Don't be young and passive like me!  You are the consumer of your health care!  (((Hugs)))

@BuffRockChick, I get so tired when my family and friends say it's in my head! I'm pretty sure if I was making it up, I would've asked for it to go away by now. I will try the stand test, once I get my Apple Watch back! I've been noticing that it has been increasingly more difficult to do just about everything lately, which isn't good seeing as how I'm expected to move out of my house at the end of the month!

Buckle up, this is a long and confusing medical record. I am an 18 y/o female. I have two diagnosed fall seasonal allergies that are severe. I have had allergic reactions to a few of the foods associated to the weeds, but nothing severe. Recently, I have been having anaphylaxis reactions, to basically nothing. I'll have a reaction, go to the ER, be pumped full with a mix of drugs, have NO labs drawn, then be sent home with steroids and instructions to call my doctor. While on the steroids, I have more reactions than I do when I'm off of them. I get rashes, hives, shortness of breath, and really just don't feel like myself at all. Yet I'm told that an allergic reaction to a steroid is impossible. Recently I began seeing an allergist. He performed skin tests, as well as numerous blood tests. Every single last one of them, except for the environmental allergies, come back negative. Every last one. I had an anaphylaxis reaction recently that was so bad, I had to use my epipen and be transferred via EMS to the ER. While in the rig it started to come back, and I was given the "cocktail" of IV benadryl, solumedrol, and pepcid. After about 30 mins to an hour, the chest tightness came back. Not as severe, but it was back. My stats were perfect, and I was sent home with yet another round of steroids and pepcid, on top of my already singulair and deslortadine. *Also note here, that no labs were actually drawn in the ER. They just took my word for what was going on* After this visit I saw my allergist within two days, and he IGe blood tested everything I had to eat that day. It all came back negative. Again. He also ran a 5-HIAA urine collection, as well as a N-Methylhistamine urine collection. Both came back negative. Now, I have a few questions. did you have that happen while on medication? If not, does anyone have any idea as to what the **** could be going on? A timeline will be given below, but it is also important to note that since January, I have had about 12 attacks. Also, for three weeks straight, I have had chronic shortness of breath with no relief. Within the last three weeks, it seems as if anytime I eat anything other than Moe's I have another reaction. Some are more manageable than others, but a reaction nonetheless. (symptoms chart below) Now where the POTS comes into play...I have an Apple Watch, and was looking over the vitals history. I was noticing that when resting, my heart rate is steady in the high 70s and 80s. However, when moving around, or even just as simple as standing up, I can watch my heart rate jump to 100, then quickly stabilize. While standing or walking, I can watch my heart rate bounce around anywhere from 70, to 100, back to 80, up to 110, down to 60,  within minutes. Does anyone have these symptoms and have a diagnosis? I am so lost and need some guidance! I've been fighting for a diagnosis for 3 months now, and I'm really getting tired of getting poked and chasing doctors.

Timeline:

January-reactions started (22nd)

February-1st allergist appointment, tryptase drawn (2), as well as IGe Latex and Gelatin (both negative)

March-Many more reactions, including first treated with epipen. 5-HIAA ran (3.4, normal <6), N-Methylhistamine (138, normal 30-200)

Symptoms:

headache, weakness, feeling faint, dizziness, lightheaded, extreme shortness of breath, racing heart rate (150s), very elevated BP, facial flushing, OCCASIONAL hives, but not always.