For forty years, I have accumulated diseases and biological weirdness. At 44, hit by another disease, I decided to refuse evasive answers and to repeat questions until I get better ones, the kind that will take into account my medical history and if possible how to enhance my life quality. I didn't get any, instead I faced several unwelcome and, on an intellectual stand point, unhealthy reactions: Angriness, incompetence and of course the usual I don't care. From that age forward, I decide to take charge of my health and get answers in hope to be able to figure out what was happening to me. I reach this week September 5, 2017 an informative and coherent level of understanding that I want to share with you today, hence the website that I consider as a kind of duty toward my community.
I will unroll my story the way I lived it. How I first thought it was only isolated problems. How I began to suspect they might be connected. How I have to fight for any little bit of data that might answer my questions and finally, how I got a coherent picture of what happened to me.
It started with my teeth at the age of 14. I already had a number of caries, which were treated. Caries means loss of dental material replaced by composite. I lost my first tooth at 17. At 52, the score is 12 teeth lost and 10 implants not counting crown, bridge and composite. My mouth is like an abandoned cemetery, while constantly going to dentists who have all done an awful job. I'm not sorry for saying this because I can barely masticate, got the teeth of a homeless while putting a lot of money and time into that problem. I've done the math, when I sum up all the moments, which I could masticate only on one side: 1 years. Acute dental pain: 6 weeks. What is that for a life?
At the age of 15, I started being suspicious of my height. At 10 years old, I was 2 inches higher than most children but at 15, it was obvious that I was 1 inch smaller, and I ended up being 2 inches smaller than the average male on my generation. During my twenties, I had several occasions to ask a question about my height, and I got always the same answer. It is not uncommon for children to have different speed of growth. Regarding my case, I was explained that my growth started earlier and faster than other while now it's much slower, but I will have the same 'on average) size than other males. The worth answer I ever had was that you can grow until 22 years, and I shouldn't worry. Seriously! But of course, back at that time, I hadn't any information that could help me to produce a counter-argument. However, they did hide an information. Today I know that I have the legs of a 1.65cm male and the upper body of 1.78 male. I have an uneven body shape. While being not that rare, associated with my particular growing curve it's uncommon enough to trigger the question about possible hormonal issue. No doctor ever investigates that question.
At the age of 18, I had to undergo the army's evaluation process, commonly called the three days (it lasts only one day). That process was mandatory and was linked to the military service. I say was because nowadays, the military service is no more, at least in my country. They found a small sight problem myopia and relief, but what is more interesting was the hearing deficit. I remember how the operator became angry at me, thinking I was faking it in hope to avoid doing my military duty. During the first days, they asked us to run. After one mile, they were worried about my noisy breath. I didn't end up in one of the ambulances that were around, but their concern didn't help them to think that an evaluation of my pulmonary function would be a logical move. Regarding my ears' problem, they follow the same flawed protocol which is: If you detect something wrong that shouldn't be present for a young man, then ask no question to get his medical history, nor make any further investigation. They would have helped to evaluate the risk of degradation and to suggest action to prevent or reduce that degradation. For my ears, I might have taken more care of them, which would have significantly changed the degradation curve of my hearing deficit, not to mention the onset of my tinnitus at 34.
At 21, a doctor who deduced, from the huge pimple that I had on my back that I had potential hormone issues. A blood test was done, but the only action she took was to send me to a friend who had tanning-booths due to my low vitamin D level. According to her, my pimple will be gone when I get regular sexual relations (I'm not the only one who has been served that kind of answer). Usually, blood tests do not include the search for hormonal problems (TSH, for example) and since males have a lesser prevalence to that illness whatever the age, one might agree that she did nothing wrong. I don't say otherwise, but retrospectively, she's the one that could have changed my life. What a missed opportunity. What should be done today for a doctor? If you don't know a person's medical history for whatever reason, and you have any suspicion of hormonal issues, test at least the thyroid. About those pimples, at the age of 22, I got a furuncle on my neck, which leaves me a souvenir of a one-inch diameter scarce.
The next step was at the age of 38. I was diagnosed with tinnitus and significant hearing loss. About the hearing loss, it was and still is strong enough to impact my ability to understand clearly human voice but good enough if people talk straight to me and if there are no parasitic noises. None of the specialists I've seen since my 38 have engaged the conversation about hearing devices. Not that I could have one, because anything that enters my ears rises up immediately the volume of my tinnitus, no matter which ear. It simply shows once more how I was left alone with my symptoms. Note: if you feel that my tone is a little bitter in that paragraph it is because I am.About symptoms and diseases. The medical world always reminds everyone that tinnitus is a symptom not a disease. That innocent sentence has tremendous consequences. You will be mistreated or worse they will look you up for the rest of your life. Why? Doctors don't have an answer to tinnitus. The disease is long gone, and no cure exists for tinnitus. They don't know what to do with you. When you ask questions about your tinnitus, most will serve you the answer "it's a symptom not a disease" and the meaning is "shut-up".
All people with severe tinnitus, will go into depression and many will kill themselves because there is no hope, for there is no cure. The two other solutions are to end up in a mental institution or to find a way to cope with it. I never saw myself as a fighter, so I will say I got lucky, but it was a hell of a fight. What do I mean by severe tinnitus? Let's take an analogy. When a plane passed over your head, and you can still hear clearly a whistling sound it means that you have 100 decibels of perception in your head, and that's severe tinnitus. To top it off more than the level of perception it is the fact that it never leaves you. You're stuck with it. How do you cope with it? You have to give time to your brain to find a way to filter that perception. In my case, it took four years.
Back to the symptom/disease issue. Doctors will see you, mostly as a person with mental disorder, not as a survivor of lethal childhood disease. They will have no pity. Be careful, don't try to push doctors to help you because they can't. You're not a crazy person, you just suffering but the society around you will not see it that way. They can't see any injuries. This led us to another stupidity, which is the subjective tinnitus.
Subjective vs objective tinnitus: If doctors can't hear your tinnitus, it is classified as subjective (99% of the cases), otherwise it's called objective. When the patient is the only source of information, you can't call that information objective hence subjective. That's old medicine. Nowadays, we can collect neural activity in real time and any patient with tinnitus will have a little spot of neurons that shows up. Doctors ought to change their classification.
At the age of 44, I was diagnosed with a thyroid nodule and an extreme low TSH. T3 and T4 had normal levels. I started questioning doctors about the cause, and they were all reluctant to search for one. My therapist told me that it could be stress. That was enough. Something was happening to me, and nobody was interested to find a cause. I quit smoking, stop taking the crazy among of pills I had to swallow, started running, quit my therapist and begin a journey to find out by myself what was happening to me.
Interlude 1: Cleithrophobia (not claustrophobia)
With my tinnitus, I had to undergo an MRI and at the end of the examination I had a panic attack. Since then I have serious issues with locked places. At first, everyone thought myself included about claustrophobia, but it was no quiet right. One day, looking for information about potential relation between teeth problems and other diseases, I found an article about the fear of dentist and cleithrophobia. It is the fear of not being able to escape a place. The seat of a dentist is such a place, as an elevator halted between two floors or a cable car cabin halted in the middle of nowhere. If they are moving the problem is mostly solved for people with cleithrophobia (you have a high chance to be release from the lift or the cabin), but not for those with claustrophobia.
Interlude 2: it's not asthma.
The first time I experienced a breath problem was at school, and I was 11. I was advice not to participate to long duration exercises. I comply of course (didn't have much of a choice. I was 11), but I never had an examination and of course no explanation. When I started running at 44, I faced the breath shortness problem but this time I was a grow-up who wanted an explanation since I have no intention to stop running.
What you have to realize, is that between the ages of 11 to 44, I had no idea I had a breath shortness issue. I thought I lacked training. I never had a discussion about it with anybody and never had an examination which would have helped me at least to deduce that I had a problem. To be thorough, I had an examination at the army. They make you exalted in a small device. The aim is to measure the volume of exhaled air and to detect asthma since that illness impact that measure. My exhaled air volume was not in range of people having asthma, therefore, no problem. At 44, I had to do that test again two times, and I have been answered that I had no asthma. While it is true, I know today that it didn't ring quite right. The doctors never mentioned the fact that the device indicated a limited among of air according to my body, age.... From the values returned by the device and from my shortness of breath, they should have asked me more questions and gone for a dynamic examination. I had to wait until my 50 to get one, and it was done by a German doctor. The examination involved a breath evaluation during an exercise (dynamic vs static examination). While the investigation is still going on, my problem is recognized. Salbutamol has not the expected effect. The shortness of breath might be related with my other diseases, but the jury is still out.
At 50, facing hostility and misbehavior from French doctors and dentists, I decided to cross the border, bearing Germany. Speaking a little German, I finally got some answers and medications. First, my shortness of breath was observed and recognized, but you already know about it. The second and the most decisive information were given by a specialist in thyroid. She managed to get my TSH back to a normal level with Carbimazol 5mg, and explicitly links my teeth problems with those of my thyroid.A few months later, an unexpected outcome started to take shape. My emotional outbursts during stress situations have nearly disappeared. I'm 52 and after 40 years of a fight against what has destroyed my life, I can claim victory.
Who would have guessed that a simple pile, a very common molecule could help me? Do you remember the doctor I spoke about when I was 21? She could really have changed my life, but she's not the only one. What about the dentists at least for the 15 last years? What about the psychoanalysts? A dysfunctional endocrinal system is today well known for impacting emotional control which in turn has a huge impact on social and professional life. Who would want not to make a simple exam when the entire professional life of a person is in stake? My victory is not only against the consequences of a mortal disease, but to stay human. I'm proud of it. Of course, I've done my share of wrongdoing, and my remorse reminds me constantly about it. My victory is about fighting for its humanity, for having values, for not give up and not drown. Fighting for being part of the society while facing inhuman people. About them, I have stories to tell you, but if you think, they are afraid that those might become public, you're wrong. They believe that they have done nothing wrong. In fact, they're unable to handle the cause and effect relation. They can endlessly argue about what they have done right, while the outcome is bad. They just don't make the link. This has disastrous consequences for our society, because that mechanism is what allow us to detect wrongdoings, to face them and to enhance ourselves, becoming a better person, a better individual within the society. It's my turn to play the doctor, and those people are my patient. My pill will be a good deal of political action, which is why there is a political section dedicated to my website.
Back to the topic. Having a victory is fine, but not all questions were answered. I needed more answers to put together even more pieces to the puzzle.
What happened to me? The solution
When I was 10 years old, I caught a bacterial (meningococcal) meningitis. From that day on, the course of my life changed but nobody tells me about it and lifetime potential side effects. I had to discover all that by myself. It was a long and painful process.
When the meningitis started it took three days before I was sent to the hospital. I was already unable to keep any food or liquid. I threw everything up. I undergo a lumbar puncture. They were three to hold me tight. I couldn't stop crying. After the results came, I was sent to another hospital that had a quarantine room. There were six or eight other children. After 2 weeks, my parent took me out against the recommendation of the doctors. I had to swallow antibiotic for 3 months and constantly wear a hat to protect me against the sun. I don't recall to have seen any doctor or gone through any medical check after the hospital.
What follow is a hypothesis to understand why my disease became taboo and how it deprived me from any medical follow-up. I can't speak straight, but smart persons will understand. Deadly and contagious diseases always involve investigation. The question is: how can children of the age of 10 (roughly) caught a bacterial meningitis in a 10 miles radius zone while having nothing in common? I remember doctors asking us questions and a discussion between my parents about the difficulty to find the source of the infection. I guess at some point they find a possible answer. In hope to escape the shame of what the investigation would conclude, my parents made a bad move and the illness become taboo to avoid any potential conversation. After 40 years, I still don't know if my two older brothers know about my meningitis.
Here comes the ugliness of what I went through and still am. All the side effects have never been linked to my meningitis. Sadly, doctors made a very bad job regarding my situation, but it all started with the taboo. If I would have been informed from the beginning of the side effects, I would have given that information to doctors who would have, I hope so, conducted thorough examinations. 40 years ago, the adults made their dirty business to avoid having to face a difficult situation, and I was asked to take on my shoulders their lack of courage.
Is what happened to me the cause of the meningitis and did the other children faced the same situation? I think the hypothesis is viable, but I lack sufficient information to conclude. Then why do I even mention the possible cause of the infection? I want to make a point regarding serious diseases on children and their lifetime consequences, and I want you to understand that I'm ready to pay the price by exposing the taboo that has forbidden me to get the health care I would have needed. Monitoring of children in serious disease should be mandatory. It is criminal not to tell a child of the possible life time consequences of a disease. His/hers life will be difficult and not telling him/her while being well-known by the people around him/her is simply inhuman. How can you call yourself civilized? It took me 40 years to solve the puzzle. There is no word harsh enough in English, German or French to describe what I think about it! Despite all I've been through, I'm building that website and will try to give answers to enhance the situation. Shame on you!
The missing chain
The bacterial meningitis attacks the nervous system and intellectual capabilities (in my case, mostly memory and focus). However, many of my illnesses are related to the hormonal system. What is the link? There are twos.
Hormonal dysfunction explains my growth disorders (height and shape proportion), dental disaster (thyroid), and emotional outburst under stress (thyroid, pituitary gland, hypothalamus, TSH and feedback mechanism). My bruxism comes from my bad teeth, and perhaps began as a consequence of my meningitis. My tinnitus comes from a disequilibrium of my teeth produced by my bruxism and helped by damaged internal ears due to meningitis. I am still experiencing breathe issues. I'm working on it to find a possible connection (if there is any) but contrary to my other disease, it's clearly not detrimental for my daily life and on my health in general. I not even told about my sinus issue when I was a teenager (14 to 16) which put me in bed for a whole day. Back then there was only aspirin, which never really work on me. Nor did I mention my back-pain, which made me look like a hunchback sometimes for a whole week. People thought I was faking, and I had to wait until I was over 18 to go to a military hospital (my father was a French military officer) to get a full examination. Sinus problems are long gone, and I have learnt to detect the slice start of back pain to take counter measures. Ibuprofen is of great help and not only for my back. I've headaches since I'm 14. Intensive sport helps me greatly for nearly all of my problems. To make it happen, I had to quit smoking. Smoking and shortness of breath are simply incompatible with sport. My psychoanalyst, was against because he feared a backslash. If you think, it's not that dumb, then you have to look at the whole picture. A health care system which has to discourage its patient to quit smoking to make sport, has something very fishy in the way it helps them. It's more complex than that. A live time disease put you in a particular situation. To get out of it and have a chance to have broader opportunities to help you, you will need to take risks. Doctors can't support decisions that will jeopardize your life. Sometimes you're just on your own when it comes to taking a life decision.
Take care of yourself. You're not a monster. You're not crazy. Be smart, educated. If you can't get help, change the parameters to make it happen. It's your responsibility. Fight, the pain will not necessarily go away, but you will feel better.