Lots of weird stuff going on, would be so grateful for any direction or advice...

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Hi - I have multiple inflammatory conditions (hoping to figure out the reason or the larger likely auto-immune one) I don't even know which section to post under, but my most immediate issue today (this happens sometimes) it feels like there is a lump on the left side of my throat, food was going down with difficulty, then I was vomiting everything back up. It still feels like there is a lump when I swallow. Feels like a hair is stuck but I'm 99% sure there isn't a hair. I have a complex health situation that I'm still waiting for all the specialists to figure out - diagnosed with chronic idiopathic angeioedema (last 12-15 years), severe asthma, allergies and anaphylaxis to things like certain pollen and treenuts, some treefruit, chronic pain/elements of arthritis. Recently I've been having some heart weirdness, back and forth to emerg, tachycardic and high (sometimes low) blood pressure (I'm 27 year old female - a LOT of cardiovascular problems in my family, my dad has a lot too and he and I share many health similarities). I've been very dizzy and fuzzy lately, almost passed out a couple times, feel as though I'm high, very tired and EXTREMELY fatigued even though my heart is hammering away like a hummingbird. I'm not overly stressed or anxious, I'm cognizant to seperate those from the symptoms as I've learned over the years anxiety just makes everything worse. They ordered a holter monitor test and I had to do 2 24-hour urine tests to check for adrenal crisis (results not back yet), and they perscribed me betablockers that I'm supposed to start today, but I don't want to take them because what if they don't find out what is wrong then? Will the betablockers mask an issue? Plus I'm already taking 4 reactine a day, omnaprazole, avamys, singulaire, simbibort and sometimes atrovent, toradol and ventolin - and I go on prednisone 3-5 times a year, sometimes for months at a time) so I'm not excited to add another one to the list (my tongue swells a lot for unknown reasons, my left cheek often gets "on fire" and swells and turns beet red, and my limbs swell, especially right thigh, right arm, I have had to take two epipens and countless steroid and benedryl shots/IVs), I'm also a severe asthmatic, and have been going back and forth to rheumatologist to check for autoimmune issues (there is definitely one but they can't agree on which, my ANA is negative but I have almost all the symptoms of lupus, they are thinking psoriatic arthritis because I've had what seemed like "gout" attacks in different joints, uric acid spikes but the Rheum said he believes it to be some level of psoriatoc arthritis, I get joint pain (and some swelling) all the time, for the past 11-12 years), I also have had regular chest pain since I was 12 or so, but it has been getting worse and is lately accompanied by the "fuzzies", near fainting, weak hands, tachycardia, headaches and some nausea. Forgetting things, high-low BP but always high heartrate. They are rushing my cardiology appointment. I'm trying not to worry in the meantime, but now I've been throwing up all day as well. And feel like I can't swallow (not like my throat is like swollen shut, but just like there is an obstruction), sorry for the million symptoms and maybe TMI...there is a LOT more I can tell you, but any ideas on how to speed of diagnosis? Different things I could ask about? Frustrated [sad] Thanks so much for your time and advice! Even with this swallowing thing...it is weird. My allergist (I see her once a month or so) so said she had a similar angioedemic case where the lady had an underlying heart issue and once that was fixed her life was awesome, less angioedema and everything. Rheumatologist wants to put me on Plaquinil for my lupus-like symptoms, but where I have mild psoriasis as well, there is a concern I could get full blown psoriasis and I don't want any more conditions...oh my. I just feel like a bit of a mess lately, especially with such crazy fatigue...any suggestions or tips or ANYthing would be so so so appreciated smile Sorry if I'm all over the place.

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  • Posted

    Ooops....I repeated myself a lot, I'm so sorry...brain is so weird lately.
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    • Posted

      Hi pamela, have you been checked for overactive thyroid aka hyperthyroidism?

      Also there was an interesting article on Tuesday 1st March 2016 in a UK newspaper called the Daily Mail about how herbs can reduce inflammation and have all sorts of other beneficial effects (proven by clinical trials). You should be able to Google it.

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    • Posted

      Hi Barbara, thanks so much for your helpful response...they did have me do 2 24-hour urine tests to check for adrenal stuff (no results back yet), and I think my thyroid was fine when they tested it last year in blood test, but maybe I should get them to test again. Sometimes auto-immune stuff is sneaky.

      And thanks, I'll definitley goodle the herbs, I'll try anything... if it wasn't for inflammation I'd be pretty healthy. Most of all I really want my diagnosis, too long with all this weirdness.

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  • Posted

    Hi Pamela--A lot of those symptoms sound very familiar to me. Have you checked out info on eosinophilic esophagitis, as well as mast cell activation disorder and histamine intolerance? --Suzanne
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    • Posted

      Thanks so much Suzanne! I've never heard of those, I will check them out and mention them to my allergist when I see her next (she handles most of my care since I'm kind of her "bubble" patient hahaha) Thanks so much!!
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    • Posted

      Many people with similar symptoms are helped by dietary changes that correct gut dysbiosis, such as one of the whole foods, ancestral diets that are out there.  Histamine intolerance and mast cell activation can be related to getting angioedema and other anaphylaxis-like symptoms and overreactions to foods, medications, and enviromental exposures. Esophagus bumps can also result. Ultimately, correcting the immune overactivation in the gut can help calm such issues down, as well as autoimmunity. Good luck! 
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    • Posted

      Thanks Suzanne! I looked up those conditions and I have every single symptom listed for Mast cell activation...I'll definitely be mentioning your tips to my allergist to get tested for those things!!! And I'll do some research on the diet. Thanks smile You're a darlin!
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    • Posted

      Glad that it might help. Also, since your ANA isn't up, this may not be an issue, but wondering if your Chonic Urticaria index has been checked (CU index--chronic autoimmune urticaria). High CU index often leads to autoimmune antibodies that cause a lot of swellings and allergic reactions internally and externally. Good luck at the allergist! 
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    • Posted

      Thanks Suzanne! I asked my allergist about the Mast cell thing, and she is getting me to test my trypase levels three times, one for baseline when nothing is swollen and two times when my tongue or leg swells up prominantly so she can compare and see! I really hope something shows up soon....I am so frustrated and almost feel like giving up searching for what is wrong and why my swelling and pain occur. Even though I did get some partial answers from my Rheum, and have the option of going on Plaquinil, I don't want to start another medication until I really know what is wrong sad

       

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    • Posted

      Was your histamine level checked?  If so, how was the result?  Have you ever had your IgA, IgM, IgG tested?  If so, were they normal?  Low normal?  High?

      Have you tried going gluten free? /Been evaluated for celiac?

      All my best,

      Jen

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  • Posted

    Update....I went to see the Cardio...he was very rude and I think because of my age and gender (27 yo F) he didn't even do any tests or even really hear me out. He discounted my BP and heartrate (even though my allergist, GP and an emerg doc all said it was a problem especially for my age, and my BP is often over prehypertension levels and heartrate is consistently 95-120, plus I had an abnormal ekg come back last year - I've even been prescribed beta blockers) he just listened to my chest and my ankle and told me chest pains were "just like headaches" to some people...it was infuriating, he basically took all my suffering and reduced it to "ehhh". Even when my cheeks swell and go on fire and get red, he was like "yeah, maybe you're just embarrassed". They SWELL, it looks like someone hit me in the face when it happens. Very frustrating. I showed him pictures of my swellings and he said I probably will never find the source of my angioedema. He was like "I don't know why all these doctors are talking about your heart, go away, your heart is fine" even though my dad was turned away like that so many times over the years, and now he has multiple heart issues...so it is very frustrating. I felt like crying all day. My doctors are great though and I'm sure they will keep looking and there will be no worries.

    Question: sometimes my feet get so cold they are ice cubes, even when I wear 2 pairs of socks and put them under a blanket, sometimes when they "thaw out" eventually they are a bit painy. The rest of me is usually warm, my toenails turn bluish, I have pictures. He listened to my ankle and said my circulation is fine...so what else could do that? Or could it just act up sometimes? Ughhhh more confused than before I saw him!!!! Thanks all for your help smile

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    • Posted

      Sounds like your Cardio is a total jerk.  I'm so sorry you were treated that way.

      Here is what I found out from the two cardios I went to: Because my heart is fine, they are less concerned about the BP and HR fluctuations.  BECAUSE there is so much fluctuation, they are limited in what they can do, because what they do to help the highs,will make the lows lower and vice versa.  (So by fixing one problem, they make another worse.)   Generally they don't become concerned until it HR is over 100 or below 60 the vast majority of the time. Mine go as low as 44 and as high as 121, but mostly it is between 60-100, so that doesn't trigger concern.  Same for BP.  Low as 93/57 and as high as 175/106.  I have had sinus bradycardia (rhythm too slow) twice and been diagnosed with sinus tachycardia after wearing a monitor for a month.  I still don't know any more than you do. Our symptoms tell us more than the doctors in these cases. (grin)

       

      I learned on my own that these times of fluctuations (up or down) can make my oxygenation go down.  This results in me feeling quite bad. So, that is something else to consider.  Take some slow deep breaths and see if the symptoms get better.  The truth is, they are aware of very little that can cause this.  I, personally, suspect these symptoms are secondary to the other problems.. i.e., caused by other problems, not a heart problem per se.  It seems to me that it is a kind of autonomic dysregulation - like being cold when no one else is, getting low grade fevers for no reason, hot/cold patches on your skin, etc.

      I, too, have been treated like a hypochondriac, told it's all in my head, and treated like I'm stupid.  You're not.  It's not.  And you're not.  

      Good luck Pamela.

      Jen   

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    • Posted

      One more quick thing.. a lot of your symptoms (angioedema, face swelling and getting red, vomiting  ... these could also be allergies or intolerances.  Oral allergies particularly come to mind.. you can be allergic to virtually anything.  In addition to foods, I found out I was allergic to many of the inactive ingredients in my pills and to sodium laurel sulfate, which is the foaming ingredient in soaps (and other stuff).  Are you allergic to latex?

       

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  • Posted

    Hi Pamela!  How are you feeling?  Are you getting to the root of the problems?

    You know, when I read your post it really spoke to me.  I've been having varying levles of problems since I started college almost 30 years ago.  Most of it they haven't figured out.  Only since last year have they started making sense of some of my symptoms.  I, too, have idiopathic angioedema.  I too have BP & HR highs and lows.  I have a lot of muscular pain in my thighs and upper arms and lower back.  I have intermittant swelling (sometimes huge) in my legs, feet, arms, hands, face, gut.  My gut is a frequent offender (swells every day to different degrees).  My previously annoying allergies have grown to monstrous proportions in terms of the sheer number of the allergies and the severity of the response.  I have been diagnosed with oral allergy syndrome and my gut biopsy shows blunted villi - so they are evaluating for celiac disease.  In addition, my IGG is growing more deficient over time.  I'm now down to 614 (700 is the normal low cutoff).  My CBC shows I'm anemic.  And my iron went from high-ish to low pretty abruptly.  I'm also vit d deficient -- all the time.  And I have psoriasis of the scalp. I fall periodically.  My muscles get weak periodically.  I have memory problems.  I get really severe fatigue. And I have blurry vision & double vision. I've been evaluated for MS many many times.  And Myasthenia gravis and similar diseases.  No antibodies (not even to Hashimotos, which was definitively diagnosed by biopsy).  It's a mad mad world we live in, isn't it?  I think it's something upstream of the main immune processes.  Something that makes things downstream go very wrong.  But I think medicine just isn't far enough along yet to help those like us who are stringing immune diseases and miscellaneous problems around faster than we can age into them.  (wry grin)  Thankfully we have each other.

    I hope to hear an update!  Take care and be well.

    Jen

     

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