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

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pamela02500
pamela02500

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1 like, 18 replies

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  • pamela02500
    pamela02500

    Posted

    Ooops....I repeated myself a lot, I'm so sorry...brain is so weird lately.
    • barbara98940
      barbara98940 pamela02500

      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.

    • pamela02500
      pamela02500 barbara98940

      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.

  • suzanne00
    suzanne00 pamela02500

    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
    • pamela02500
      pamela02500 suzanne00

      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!!
    • suzanne00
      suzanne00 pamela02500

      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! 
    • suzanne00
      suzanne00 pamela02500

      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! 
    • JenniePoobah
      JenniePoobah pamela02500

      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

  • pamela02500
    pamela02500

    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.

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    • JenniePoobah
      JenniePoobah pamela02500

      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   

    • JenniePoobah
      JenniePoobah pamela02500

      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?

       

  • JenniePoobah
    JenniePoobah pamela02500

    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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