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LOTS going on...grateful for any direction or helpful hints...

Posted , 8 users are following.

pamela02500
pamela02500

Hi - I have multiple conditions (hoping to figure out the reason or the larger one) I don't even know which section to post under, but my most immediate issues 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 very complex health situation that I'm still waiting for all the specialists to figure out. Recently I've been having some heart weirdness, back and forth to emerg, tachycardic and high 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 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'm not excited to add another one to the list (I have chronic angioedema, 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 anaphylaxsis too and 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.

1 like, 21 replies

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  • pamela02500
    pamela02500

    Posted

    Hey all, just an 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

    I've since heard that he has a very bad reputation for being mean and not taking people seriously. He told me 90% of his patients have "chest pain", not heart issues and are basically foolish...he even said costochondritis was just a "word doctors throw around" and only one person he has seen in 40 years of practicing actually had it. But yet he did no exam on me to check. And my family doctor did an exam and diagnosed me with that last year. sad ugghh. Where now? Thanks so much for all your help so far guys!

    • cindy63197
      cindy63197 pamela02500

      Posted

      Oh boy, that guy is nasty. Is there another cardiologist somewhere nearby to get a second opinion? Because he's not taking you seriously, you can't trust his opinion. Perhaps your regular doctor has an idea for you? What you are experiencing is not normal.
    • pamela02500
      pamela02500 cindy63197

      Posted

      Thanks Cindy. My husband said it was a good thing he didn't come in with me or he might be in jail for punching someone haha...sorry, that wasn't a nice joke haha. But my husband and parents said they witness all this stuff that happens to me first hand, and they (especially dad) is STILL worried about the heart thing, my parents and allergist were all mad at how he treated me...I just feel like an idiot, like I'm so worried doctors won't take me seriously now because he said he was going to write a letter to all my doctors saying "stop talking about this girl's heart!" even though he did no tests. One good thing is my xray came back good, so my heart isn't enlarged like my dad's. A holtermonitor test is coming in the mail soon that the emergency doctor ordered after he did an exam. He also said he couldn't touch my ribs without flinching so that is in line with Costochondritis...but this cardio basically reduced everything I go through to "no biggy...so what". The chest pain I get knocks me flat. Toradol usually helps some of it, the really sharp kind, so that further proves it is inflammation based, but the slow squeezing fist pain over my sternum is what seems to come with the extreme fatigue I'm experiencing. Mom thinks it sounds like angina like my pop who died had. I don't know, I feel really discourged now. I just hope my family doctor isn't swayed by this guy's mean letter he said he was going to write. He had a condescending expression on his face the moment he walked in the room and saw me, sometimes because I look relatively healthy (I probably just look tired) people judge me based on that and my age. My allergist ordered a few more tests and wants to see me in a couple months again, she wants me to think about taking the beta blockers. Well see I guess.

      And unfortunately where I live it takes years on the list to see a cardiologist, so I doubt I'll have any luck soon. But my parents have a doctor in florida, they told him about me and he said he really wants to assess me because he said it sounds like I have some really extreme issues and he has some ideas on how to help. Maybe I'll save up the money some day for that, but traveling is really rough on me. Anyway I guess I'm not going to pass out any time soon, I guess he would have at least been able to tell the major things from listening to my chest/ankle hey? So I'll just try not to be concerned with the ticker and just try to feel better and get my energy back. My family really wanted him to do a stress test because even the slightest exercise makes me feel faint and not well and have to sit down especially lately. Sorry so long, thanks again Cindy!! Appreciate the encouragement to keep searching even though I feel like just accepting that this is how I am now after seeing him.

    • pamela02500
      pamela02500

      Posted

      Also I guess the freezing/purple blue finger and toenails could have something to do with that Rayneud's syndrome since I seem to have ALL the symptoms of lupus and my Rheumatologist is still looking into that. He wrote a scrip for anti-malarials to see if my swelling and symptoms respond to that, but I'm still reluctant to take them, on so much medication as it is, now they want me to take betas and antimalarials...but I want something to change so maybe it is worth a shot? Thanks, sorry! haha I'm usually much peppier than this and not so negative.
    • pamela02500
      pamela02500 cindy63197

      Posted

      Hi Cindy! Thanks so much for your concern, you're so kind!! I'm doing a bit better...I started taking more of my puffers which seemed to help a little, but I still can't tolerate even light exercise lately, less dizzy just a couple spells lately, still tired but a little better. None of my doctors were too happy with the butthead cardio I saw haha. I've seen allergist and Rheum since we talked they both seem to at least agree on a tentative diagnosis of psoriatic arthritis. My parents are going to get my dad's really good Florida cardiologist/internist on the phone to get some more advice on which meds to take, they might even fly me down sometime soon to get fully tested/assessed. All my docs are really pushing for plaquenil, but my family is nervous about the risk for full fledged psoriasis outbreak...haven't started the Metropolol yet because I have my holtermoniter test in a few days so I wanted that to give us a fair reading that isn't influenced by BP meds. Doctor said to try to exercise when wearing it so it can see if my heart is the problem (could be my lungs because they get quite bad and I do have exercise induced asthma and the other types). Still getting blue nails and freezing feet, no real answers on that. Overall doing better than a a few weeks ago! smile Hopefully headed toward a more stable health period soon.

      Really have that plaquenil on my mind though, don't really know what to do about that, hopefully the Florida doc will have some answers! smile Thanks again Cindy for your support and advice!! smile Hope you're doing well!

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