Discussions By Condition: I cannot get a diagnosis.

Cocktail Of Miseries. (With Bracket Asides)

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • November 24, 2008
  • 02:32 AM


I am a 20 year old male, living in Ontario Canada. I have been suffering with various problems for quite a while. I do not have a doctor, and these symptoms remain undiagnosed. It has been over a year since the most serious ailments began.

On New Years Eve of last year, I ordered a pizza to go with my beer. Typical New Years celebration really. I had a few slices, watched some celebration coverage on TV, and then: *BOOM*, I was hit with the most devastating bout of flu-like illness I have ever experienced. I was so ill I could barely move to the bathroom to throw up.

I was sure it was food poisoning, but I was told by my mother that our cousins (who my family had just been visiting), were also ill with a flu-like virus. I still wanted to call the restaurant and ask about it, but I was talked out of it on the grounds that I would be "disturbing people", so unfortunately now I'll never know for sure whether it was the pizza or the virus.

The strange demon virus never quite went away. It became weaker,and the vomiting stopped, but I still had a general feeling of illness that didnt leave, even after weeks and months. I became concerned that I was being poisoned by something in my house (mold, or bad water pipes perhaps). I stopped drinking tap water to be on the safe side, and I made sure to wash my hands as often as possible.

I began having trouble thinking. I was in a perpetual state of confusion. Everything felt distant and uncomprehensible, like my cognitive abilities were a radio signal, losing strength. The only thing I retained was my ability to speak (still the case). I began jokingly referring to myself as "Thesaurus With Illness" to friends, because thats all I was by that point. An archive of words, and some illness. I felt only semi-conscious of my surroundings at any given time. It was as if I were standing in a well decorated room, and suddenly everything surrounding me disappeared, and I was in an utterly black void. The only difference being that instead of not being able to see my surroundings, I was unable to absorb them mentally. I felt like I was taking in only about 10% of the world around me, and the rest was just fuzz, and I had to use great concentration just to do simple tasks.

After a few months of the brain-fuzz, and the ever present demon flu, I began having stabbing chest pains. They were sharp and frequent, and not the same as panic attack chest pain (the king of false alarms). These pains felt unhealthy, in the "your body is not happy about something" sense.

I became understandably concerned that I might be suffering from some type of heart problem, so after a week or so of procrastination, I finally headed up to the hospital. One in a different town. I suffer from a shall we say "personalized agoraphobia", and there are people I don't want to see working at the local hospital.

I spent a lot of time waiting around in a room at the hospital for the doctor to arrive (doctors like to walk at approximately negative ten miles per hour, while repeatedly pausing to stare down at their clipboards as if something relevant is written there). When he did arrive, I told him about the pain, the fuzzy thoughts, the muscle weakness I had started to experience, and the whole story about how it had started with a nasty illness. I also mentioned that I had come to this hospital rather than the one in my home town about half an hour away, because I suffered from a kind of selective agoraphobia, and thats why I was here instead of there.

Say no more. The tone of the little hospital interview changed on a dime. I was treated like some kind of unreliable maniac or drunk. I made it clear to the staff that I was having the chest pains *right now* as I was speaking to them, and that I was not having a panic attack, and that I was completely calm and actually pretty at ease. I did not feel that my life was in danger at that exact moment (I had been having these pains for over a week and was still alive), but the pains were very pronounced, and I know that its better to be safe than sorry with left-side chest pains.

Since the hospital staff seemed content with assuring me that it was all in my head, and then brushing me off, I asked for an EKG to make sure the problem wasn't my heart, a CT scan of my torso (to provide a view of my digestive system, to see if there was a problem there), and an MRI of my brain to look for lesions or abnormalities, for the brain fogs** (I was happy to wait a couple of weeks or months, as long as it was ordered.)

They did not bother to mask their disdain for my ideas. It was clear that they felt (as every other doctor I've seen seems to) that patients do not have the right to walk into a hospital or walk-in clinic, or doctors office, and tell the doctor what he or she should be doing. They gave me the usual, subtly worded "I'm the doctor, you arent" speech, and then agreed that an EKG was necessary, given the site of the pain (standard procedure). They also ordered the standard blood tests. They refused to order a CT scan or an MRI.

When the EKG came out saying all was clear (except for high blood pressure, which could be accounted for as a symptom of "anxiety"), I politely pointed out once again that I was not anxious, and therefore the test was an accurate representation of my blood pressure. I don't know why I bothered to talk actually, beyond the first five minutes of the initial intake. The jury was in at the very beginning. Everyone felt that I was some type of neurotic, insane, anxious xenophobe who was simply wasting the hospitals time with my mental illness.

They failed to notice, or mention to me that my symptoms exactly matched several well known disorders, including Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome and Cushings. Instead of investigating any of those, they decided it would be much more logical to send down a mental health specialist to talk to me, and ask me absurd questions such as "do you feel that your thoughts control reality?". The message was clear. In small Ontario towns, the word "agoraphobe" connotes "mentally deficient, psychopathic, drooling buffoon who only goes to emergency rooms to waste everyones time".

After they refused to order further testing, or investigate anything besides mental illness, (even though I don't have a family doctor, or any kind of support for medical issues), I decided to leave.

Since there is a doctor shortage here, and the only hospital I can really go to has brushed me off and left me to rot, I've decided to be proactive in my own solution. I can't write myself a prescription, or give myself a legal diagnosis, but I can try to figure out what is happening to me and why. I've spent a lot of time researching the diseases which most match my own symptoms.

After the hospital episode, which was very depressing and alienating for me, I went back home without any knowledge about what was wrong with me. I was more or less suicidal by this point. This is the time when my symptoms worsened. The sharp pains I had been getting in my chest and left arm, spread to the rest of my body. I was weak enough at times that I had trouble walking. I literally felt like a ninety year old man. My legs had barely any feeling in them, except when they decided to fire off blinding pain out of nowhere. I was not stupid. I had done quite a lot of research into these various illnesses by this point. The symptoms clearly pointed towards MS.

Multiple Sclerosis still hasnt been ruled out by anyone for me, since there still isnt a doctor to be found. However, I think of it less and less as a possibility. Maybe this is where the degree holders can help me out. My initial "attack" happened on New Years Eve of 2008. I did suffer many of the symptoms of MS, which is why I was concerned. I had numbness and tingling, pain, muscle weakness, cognitive impairment and vision problems. I started to realise though, that my symptoms don't really match up exactly with either MS or Fibromyalgia, though the symptoms are similar. The pain I get feels as if its right inside my bones. Never near the surface. It is not a boring unbearable pain (MS) and not ever on the surface of my skin and painful to the touch (Fibromyalgia). It is a deep ache. It feels as if the marrow in my bones is enflamed and red and aching (my way of describing how it feels, not a literal assessment).

The vision problems I experience are not a blur, or complete blindness like with MS. Rather I am seeing a lot of green and transparent shapes, lights and afterimages, floating around and obscuring my vision, much like a migraine halo, but moving differently, and appearing differently. This would indicate to me something pinching nerves or obstructing necessary pathways somehow.

I'd also like to know what the theoretical statute of limitations is on MS. If I hypothetically did have my first attack on new years of last year, would be possible for me to go this long without any paralysis or extreme weakness of the legs (that cleared up for the most part and is about 90% back to normal now), complete loss of vision (the most I've had is some double vision, and the obscuring ***l-lights of course. those went away for the rest of the year until this week. I wonder if its just infected sinuses pushing against nerves?

The pain in my legs and body has diminished substantially since the colder weather has moved in here in Canada. I still have the constant dull ache all over, in the bones, like one would have during a bout of flu, and very rarely the pain will flare back up again briefly at random, but for the most part it seems to be gone (for now...)

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