Potentially misdiagnosed, mysterious symptoms
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Hello. I would greatly appreciate your expert feedback on whether there is something wrong with me or it is all in my head. I have been bouncing between doctors like a ping-pong ball, but have been unable to reach a satisfactory conclusion. I've caused considerable stress to myself and my family members and would like an end to this. Apologies for the length of this text, but I don't want to miss out any detail, which might turn out to be important.
Prior history:
I am a 34 year old man and have been healthy all of my life with no allergies, no hospitalization, and making it a point to never visit any doctors - although I have always been prone to sore throats, and one day had a mysterious bump show up suddenly on the side of my hand, along with fever and sweats. Having smoked approximately 5 pack years, I quit 10 years ago. My father passed away from lung cancer at the age of 56. In autumn of last year, I had a wisdom tooth pulled out and a very painful root canal on a neighboring molar due to infection / toothache, for which I was also prescribed antibiotics at the time. An artificial crown was put on the molar. I experienced periodic swelling in the gum underneath the treated tooth for the next 8-10 months but did not visit the dentist again, as the root canal had been extremely painful and now I had no pain in the tooth.
February-March 2016:
Now I am not sure what is wrong with me but something has been up, since 7 months ago, in late Feb / early Mar of this year. That is when I developed a throat infection (swollen tonsils and congested sinus) that went away after a 5-day course of antibiotics (Amoxicillin, self-prescribed - a mistake I know). The infection returned a week later, and again I took the same course of antibiotics, which relieved the symptoms. About a week and a half later, I woke up one day with a heaviness, i.e. a dull ache in my left chest. This alarmed me as I had not experienced such a symptom before. The ache stayed with me the whole day but grew less in intensity towards evening. (The ache has since then persisted with me constantly for the next 4 months or so, until July). The next day at work I started experiencing palpitations and mild dizziness & sweating. I found it difficult to focus on my work and started, what I now believe to be, panicking. Feeling that this might be an imminent heart attack, I took a couple of Aspirin and visited a heart specialist in the evening. He measured my heartrate and blood pressure, which were both high (125+bpm, 140/90), and fluctuating wildly as he took the measurements. He ordered an Echocardiogram, Electrocardiogram and Exercise Tolerance Test. All of them came back completely clear. As a precaution, he prescribed me some heart medication, some blood tests (thyroid, cholesterol, diabetes, blood CBC etc) and asked me to monitor my symptoms and come back to him in a week. My blood tests came back clear although cholesterol was slightly higher than normal, and there was mild neutropenia in relative terms, with overall blood cells within normal range. I experienced side effects with the heart medication, such as having sinking feelings and a more pronounced ache. So I quit the medication, changed to a healthier diet and began a rigorous exercise regimen. My ache would get better with the exercise and I experienced no shortness of breath. During this period of 2 weeks, my weight reduced from 78kgs to just under 74kgs, but my symptoms remained. I visited the heart specialist again, and he was annoyed to find out I had quit taking the medication. Since my ache had not completely gone and I would still feel experience palpitations, as well as lightheaded and unwell from time to time, he suggested I consider a Coronary CT angiography.
April 2016:
I went for the Coronary CT and the results came back completely clear, with the exception of "trace pericardial effusion". Having lost confidence in the previous heart specialist, I took this report to a new heart specialist who said there was absolutely nothing wrong with me and that I was getting paranoid. He suggested I continue with my exercise and not worry about a thing.
My symptoms, however, had not gone away. I would generally feel unwell. I would intermittently experience burning in the middle of my chest, along with a constant dull ache on the left side. A couple of times I experienced sharp stabbing pains on both sides of my chest, when bending over or when catching a ball. My heart beat would begin racing for no reason (140+bpm), and I would often awake with a racing heart beat. Lightheadedness and malaise persisted. Sometimes I would get a heavy head, and a light cough (feels like it originates in neck, not chest) from time to time. I would also get periodic bouts of severe nausea for no apparent reason, although I never vomited. Sometimes I would get nauseous as soon as I sat in my car or turned on the room air conditioning. This nausea would last for 5 minutes, and then I'd be fine. I also experienced another really bad sore throat in mid-April, in which I developed mild fever and severe swelling of the tonsils. My throat was so hoarse that my voice shut down for two-three days and I could only speak in a croaky whisper. Towards the end of this infection, I visited an ENT specialist who observed nothing unusual, apart from swelling of the tonsils. He advised that I get an ASO titer blood test, but this also came back clear. A week later, on a follow-up visit to the heart specialist, who was also a family friend, he detected pronounced wheezing in my lungs. He referred me to a good pulmonologist, just in case I was still worried about my health, although he personally felt there wasn't anything seriously wrong with me. Then in late April, a worrying symptom developed. I began to spit blood, mixed with saliva, when I woke up in the morning. The more I spit, the more pink/red the saliva would become. Also, the saliva was sometimes foamy, and sometimes muddy and dense white mucos-like, throughout the day. This symptom persisted for three days and on the third day in office, I experienced palpitations, followed by a little cough, and then I spit a little bit of pure blood. Getting nervous, I went for a a chest X-ray, and around this time I also went for autoimmune ANA and HIV blood tests. All of these came back clear, so I went for a chest CT scan the next day. Results came back clear, with the exception of "bilateral basal pleural and pleuripericardial adhesions". However, I was still spitting blood (without cough), during the day too, along with in the morning. Once this happened in office, followed by a burning feeling all over my chest.
May 2016:
I visited the pulmonologist who was puzzled by my symptoms and clear test results. He ordered some blood tests and sputum tests, which all came back negative, although I was unable to get a good sample of sputum since I didn't have a cough. The pulmonologist suggested that I could consider a bronchoscopy. Worried that I may have cancer or something as the blood kept coming off and on in my saliva, I went for it in mid-May. The pulmonologist showed me the video of the inner tubes, which showed redness in certain areas and swelling in one area. A sample of Bronchoalveolar Lavage was taken and sent for testing. However, there is a risk that it had gotten contaminated on the way, as it had to be split into two separate samples at the labs reception area for testing in two different areas.
Results on cytology came back negative for malignant cells.
June - August 2016:
Fungal culture came back positive for "heavy growth of Aureobasidium pullulans". A few weeks later, bacterial culture came back positive for "non-tuberculosis mycobacterium spp. other". The pulmonologist prescribed Prednisone, along with anti-fungus and anti-TB medication and vitamin supplements since start of June and start of July, all of which, with the exception of Prednisone, I am still taking to date. Once I started taking the medication, my symptoms improved considerably. However, I developed severe leg cramps after starting the TB-medication, first in one leg for a couple of days, and then when that one got better, in the other leg for another few days, all along the thigh. I started taking a lot more fluids which seemed to help. I felt cheated by my doctor, so I consulted another pulmonologist who said that there was no way I could have the fungus and NTM infections as my X-ray and CT were clear and I didn't have a cough even. He said the postive cultures were probably due to some sort of water contamination. He suggested I quit the medication and go for a sinus X-ray or a CT even, if I liked. However, I did not follow his advice as my symptoms had improved generally coincident with taking medication, and I had also detected a severe case of mould on the walls of a room in our house, where I used to spend about an hour every day. My chest ache and wheeze had disappeared, and I had started feeling like my old self. My weight increased to about 78kgs.
September 2016:
Last month, in September, my ache returned, only this time it was intermittent. I would also experience intermittent central chest burning sensations. Also, I got a sore throat about the same time. Sometimes I would wake up smelling blood. Once I woke up and spat out the same old muddy coloured saliva. Another time I spat out a lump of white mucus. My pulmonologist checked my breathing and found evidence of a pronounced wheeze. He suggested all my symptoms may be due to rigorous exercise, which I had started again, that was causing wounds in the lung to bleed. He suggested that I only go for walks and nothing more. He also prescribed an inhaler which he said I could use in the morning and at night. I heeded his advice but found the inhaler only made me feel more short of breath - so I quit using it. Having discontinued exercise, and only going for walks, my weight went up to 80kgs, where it has stayed ever since.
October 2016:
Last week I developed a sizable swelling in a lymph node on the right side of my neck, where my head meets my neck, along with painful swelling of a flap that covers my partially grown lower-right wisdom tooth. It has been very difficult to swallow, and I also had low-grade fever. Every morning when I wake up, my left hand (the one with the bump on it) is swollen and numb and I can't make a fist. The bump on my hand also starts to ache, and the ache goes up my whole arm, to my shoulder. However, the hand swelling and ache goes away within a couple of minutes. I feel it could be a side-effect of medication that I am still on, but am concerned why it only happens in my left hand (the one with the bump). My neck swelling has come down over the last 2 days but is still there today, causing me mild pain. I still get lightheaded and feel generally unwell. The wheeze comes and goes. My heart occasionally starts to race, mostly when I wake up from sleeping. I can't help feeling there is something wrong with me but it is not that which is being treated. None of the doctors I have met believe there is anything wrong with me, apart from the pulmonologist who I feel is a little too trigger-happy.
I believe there's a possibility my problem could be related to my teeth - starting due to tooth infection following root canal, and latest one due to a likely infection on wisdom tooth on other side of mouth. However, I never bleed when I brush or floss my teeth, and I don't have significant tooth or gum pain. I don't think it is a fungal or bacterial infection as I have been taking medication for it since the last 3-4 months, and I am still getting occasional symptoms.
These symptoms have really upset me and my family, as I always used to be completely fit and healthy before, apart from the occasional sore throat. I am aware that the above may read like the ravings of a hypochondriac. I'd really appreciate your opinions and advice, or reassurances.
0 likes, 4 replies
stephb22 anony09318
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anony09318 stephb22
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richa05315 anony09318
Posted
Dear anony09318,
It's really sad to know your struggles.. I also feel chest pain, breathlessness, rapid heart rate. But nothing seems to help. Don't worry, I hope you will get better soon, my family too is worried like a hell all the time, I don't know what to do,. I m going this Saturday to GIT specialist.. hoping he will find some ways for me
anony09318 richa05315
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