Undiagnosed and rare conditions
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Undiagnosed problem over 4 years

reigo43reigo43 Member Posts: 3 Listener
Hi,

My journey began more than 4 years ago when a severe heart arythima occured in a spa after a workout. Normal rythm didnt recover so they had to do a cardioversion. Several research were done but all seemed to be ok. Doctors put the blame on my lifestyle and told me to not party and train together, which ofcourse  I had been doing. So I changed my lifestyle completely, but the health started to go down. I had tremendous fatigue, heartburn, shortness of breath. I wasnt able to work, train, felt cold all the time and it also felt like the pulse was very low and as my heart is going to stop or is really tired. Most wierd symptom is a crackling sound somwhere inside my upper chest which i can hear in my ears. Sometimes my wife can hear it if she puts her head on my chest. Crackles sound like something brakes inside. Sometimes crackles are small sometimes really loud. From the beginning I felt it has something to do with food. If i ate, it made me feel better, crackling stopped, but only for few hours. After few hours everything starts all over again. Its also a releif when the feces come out, when i fart or burp. Usually its hard to burp and it feels like bubbling inside. Also theres pretty strong erectile dysfunction. Went to the doctor, had research again, echo, chest MRI, load test x-rays, gastroscopy, colonoscopy, different allergy tests and so on. All are clean. Cardiologist told me to see a psychiatrist, but I couldnt belive these symptoms can be mental so I didnt. So life went on, it got a bit easier(its easier in the summer and in the warm weather somehow) until 2 years ago I had another arythmia. I started when i jumped into my bed. Doctors told me that I shouldnt take my beta blockers(was diagnosed hypertension 6 years prior) beacuse they make my pulse really low. So I was given electric shock again, different hypertension pills and sent home again. Various research were done after but suprise suprise nothing. Also 24hour holter monitoring. Another series of scopys were done to see it it was hiatal hernia, but according to the results no(theres also a pain just under the lower part of my left ribs). During the next years I've tried different alternative doctors(chinese medicine, accupuncture, chiropractor, ostheopath and so on) but so far nothing. At the same time ive been seeing a psychiatrist for over half a year, but he has put his hands up also. Antidepressants have no effect what so ever. Main symptoms remain: Crackling sound while inhaling, shortness of breath and a relied for minute when the crackles come out. Severe erectile dysfunction, fatigue, like there was a load on my heart and the heart is not able to speed up as it used to(hard to work out), feeling cold all the time, tinnitus, buzzy feeling on the left side of my face, some of my fingers get numb sometimes, in my mouth it feels like i had to brush my teeth several times a day(tongue has ulcers all the time). Probably theres something I have forgot because over the years there has been a lot of wierd going on with my body. I'm out of options and I'd apreciate if someone could help.

Replies

  • Tommyb92Tommyb92 Member Posts: 75 Courageous
    Hi There @reigo43, I am one of the community champions, sorry to hear you have had all of the issues you've listed and thank you for sharing I am sure one of my fellow community champions will be able to assist. Thanks Tom

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  • Ami2301Ami2301 Member Posts: 7,440 Disability Gamechanger
    Welcome to the community @reigo43 Unfortunately we are not medical professionals therefore we cannot suggest what it is or may be. However, we can share our experiences. I understand you've seen many doctors, etc. But have any of them put all your symptoms together and work out what's causing it as a whole? Or have they been testing each symptom to see what the cause is?

    The reason is because I've had varied symptoms over the years, and it took a specialist team to put all my symptoms together and complete the puzzle, so to speak. I did visit a lot of doctors, consultants, et. Prior to meeting the specialists, so I can understand your frustration with keep going to and fro with your GP.
    Disability Gamechanger - 2019
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @reigo43! How are you doing?
    Community Partner
    Scope

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  • reigo43reigo43 Member Posts: 3 Listener
    @Chloe_Scope if not considering the symptoms I have described, I'm pretty much ok thanks :)
  • reigo43reigo43 Member Posts: 3 Listener
    @Ami2301 Doctors aint listening anymore. I mentioned the crackeling sound. Every time i visit a doctor i start with the cracking sound but its like they dont want to hear about it and it always stays somewhere in the background. But yes you are right, they havent put all the symptoms together. Every one of them is dealing with their own field and wont go further. But thanks I will keep going. 
  • jadealyssajadealyssa Member Posts: 63 Courageous
    @reigo43
    Sorry to heat your having a hard time getting the correct help. I can sympathise with your frustration with your doctors not listening to your concerns as I have personal experience of this myself and it's very upsetting.
    I talk about my son alot on here who is a cerebral palsy sufferer at age 3. He has only been diagnosed with this in August 2019. After countless visits to doctors from the ages of 10months old raising my concerns in regards to him not meeting milestones and not being able to even sit unaided.
    After being fobbed of countless times by health visitors/ doctors and so on that he was "just a late developer". I didn't give up my fight. They say trust your gut and I kept going back requesting different doctors at my surgery each time until finally I got someone who listened to my concerns and referred me onto a pediatrician and senior paediatric surgeons.
    So the point of my story ( sorry for rambling) is to keep going back, request different doctor. Keep voicing your concerns until you are listened to. 
    You know your own body best. You know when something doesn't feel right so trust that
    I hope you get answers soon 
    Stay positive! Your job my thoughts 🙏 
    Anything I can help with please ask and I'll do my best 
    Best wishes 
  • RacheleLeahSilveraRacheleLeahSilvera Member Posts: 69 Connected
    @reigo43
    Hello and welcome, I totally understand your frustration as I have been undiagnosed since the age of 8 and I am 18 in a few weeks and still after all these years don't have an answer.
  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    My cardiologist is a heart specialist and he has a youtube channel called york cardiology. You might find something there.
  • d1904d1904 Member Posts: 1 Listener
    @reigo43 Have you received a diagnosis yet?
    I'm not a medical professional but to me this reads as autoimmune, did you have any anti-body tests carried out?
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