In Need Of Diagnosis, Inc.

Undiagnosed Cases
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A plea for help!

Please read my story, it all began 11 years ago….

My case involves endless tests, dozens of hospitalizations in Italy and abroad in Spain, Switzerland, and Germany.  For years I have searched for answers but none have come.  I desperately and urgently need a person who will take my case to heart and not easily dismiss me as countless doctors already have. I am seeking a health care professional who will not limit himself/herself to doing diagnostic tests but will consider also the history of my symptoms for which I have meticulous record.

Before the days of sophisticated scans, doctors listened to their patients to glean additional information.  That no longer seems to be the case.  Physicians look at MRI’s and CT scans and if these do not reveal a problem, the patient is deemed to have a “somatoform disorder.”  They do not add the patient’s history to what the tests show so they don’t have the whole story.

I have been terribly ill for eleven years. Four of these years were debilitating enough to physically keep me at home, with excruciating pain. This caused me to lose a lot of my clients, as I am a salesman.

It began in February of 2000 when I heard a strange noise like a “ziss.” It seemed as if there was a light blowing of air in the spine that affected the skull. At first I didn't think much about it because it didn't cause me any distress. I just wondered what was causing the strange sound.

 

Later, after normal gastroesophageal contractions and certain movements of the spine (I can't explain it well in words, and I was only able to realize what was happening after I had felt it a couple of times as I had never experienced anything like it in my body before).

The next morning when I got out of bed I had a very stiff neck, a strange, severe headache, diplopia (double vision), and a burning sensation in the spine. The burning sensation was in the dorsal area, which spread to my arms. There was also a loud ringing in my ears and I felt as if my nose and ears were about to explode.  I was not sure what was wrong with me. I thought I was going to die or that I had a tumor.

It is difficult to put things into words but when I move my arms backwards and thus bring the shoulder blades to the spine, or when I bend the dorsal area of the spine (where I feel the burning sensation) I hear a "zisssss" sound and I feel like there’s air blowing inside my skull. Since then I have always heard this strange noise. When the sound is stronger and occurs more frequently, the burning sensation in my back increases. I can feel the cervical vertebra become completely stiff. When I turn my neck I feel as if something is moving forward, aided by the turning or movement of the cervical vertebrae;  I can hear that movement inside the skull. After a couple of hours the headache also increases, and I feel excruciating pain. It isn't a normal headache: it's very unusual and debilitating. The worse attack lasted twenty-one days of the most dreadful pain. I still tremble when I think about it.

In 2003, after three years of physical suffering and mental torture due to the chronic pain, the symptoms actually calmed down. However, the headaches and phosphenes (a sensation of light triggered by something within the eye rather than by exposure to light) were still there in a mild form. The double vision faded so I was able to go out of the house and to resume all activities that a young man of my age does. I was still living though with the fear that those pains would return to the previous level. I tried not to think about it too much and tried to continue to live a normal life.

I managed to live a somewhat normal life until 2006 when I strained my back, which is when the same symptoms returned. I began to feel that blowing and burning sensation in the spinal column and the feeling of bursting in my head accompanied by blinding pain. I had partial relief when I took paracetamol or codeine.

There followed other tests, other stays in hospital, and other drugs. It was an ordeal that lasted yet another year and eight months, with strong, unbearable, inhuman headaches, which led me to think that the only thing that could put an end to all this pain was also the one that would put an end to my life ... and yet I love life .. I really do.

At the end of 2007 I improved. There was less noise, less burning sensation and less pain in the head. I began to work again and to lead a "normal" life. I still had a bit of pain in the head but it was tolerable.

A year ago, after a particular movement in the gym, I hear that sound again, that blowing in the spine that I can hear in the skull.  Again I suffered excruciating pain.  It is so difficult to live like this. There is no relief.  Even when I try to sleep, I am awakened by the pain.

In addition to the pain,  I have had to deal with physicians who, when not being able to diagnose the problem, attribute the problems to a somatoform disorder.  Per Wikipedia, “The symptoms that result from a somatoform disorder are due to mental factors. In people who have a somatoform disorder, medical test results are either normal or do not explain the person's symptoms.”  It is perhaps easier for a physician to believe that the problem is with the patient’s mind rather than with their inability to identify the cause of the problem.

The attributing of the problems I was having to a somatoform disorder was devastating.  This was not because of the social effect of those opinions but because it meant that the doctors would stop looking for a physical cause.  The pain is incapacitating and there is no relief in sight.  I am exhausted.

                              Neck CT without and with contrast done on 11/07/2006

“The CT scan of the neck performed during intravenous infusion of iodinated contrast medium did not highlight abnormal swellings along the lateral cervical lymph node stations, either superficial or deep, nor supraclavicular bilaterally. Normal salivary and thyroid gland morpho-densitometry. At present, there are no images due to expansive processes in the larynx. The CT scan of the facial mass performed with 2 mm adjoining axial and sagittal scans, integrated with coronary reconstructions, pointed to a large hyperpneumatisation of the sphenoidal sinus and of the bone tubaric channel. The presence of concomitant expansive formation cystic in nature of diameter 28 mm in the context of the right maxillary sinus. The morpho-pneumatisation of the remaining sinus cavities is normal; absence of inflammatory tissue or expansive endosinusal processes”.

During these last 11 years there have been times when my quality of life was satisfactory.  Although the external disturbances have always been present and the headaches were present, they were tolerable.  The strong attacks were less frequent, and, more importantly, less intense.

A year ago while working with a loaded press at 90 degrees, I was squashed and my chest was crushed. While exerting maximum effort to get back up I again heard the zss noise.  By the next day I had a relapse of 40-50%.  Two or three months afterward, my problem flared up again.   

I have had many ups and a few downs with the help of painkillers “sodium methanesulphonate noramidopyrine” and “paracetamol + codeine” which sometimes gave me partial relief.  I had been able to go to work though I was not capable of peak performance.  Now, I have again deteriorated to the point that I am unable to go to work or to live a normal life.

In October 2011 I went to Verona. CSF benign hypertension is suspected. This is to be checked in a future examination (I am waiting to be called as the machinery is not yet available there). In the meantime I am taking Diamox 250 but unfortunately without any benefits.

Some months ago an Italo-American doctor took an interest in my case. He focused on the CAT scan and noticed a thinning of the skull at the level of the pneumatisation, described below. He thinks that there may be leakage of CFS at the temporal bone suggesting further study of this point. He hypothesizes a superior canal dehiscence syndrome.

It is now 11 years that I have heard that “blowing” and little consideration has been given to this aspect of the problem.  Since the cause of the problem has not yet been identified, it would seem that no piece of the puzzle should be overlooked. Seemingly this type of symptom is not documented in medical literature so it is given no credence.

So after 11 years of tests and studies, the only unusual thing noted is a big hyperpneumatisation.

I am willing to do anything... now more than ever, to find help! I have a fabulous three-year-old daughter, Charlotte, who is waiting for her dad to play like he used to up to a year ago ...  I owe it to my child, to my family, to myself and to life in general to continue the search for answers. 

Medical books are still being written, so no one should stop reading or writing when they reach the last chapter ... and allow people to suffer so terribly. Please help me!

Below is a summary of the places that I have sought medical help and a list of all the tests that were performed on me.

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HOSPITAL  ADMISSIONS:

·         ITALY - Catania, Cannizzaro Hospital, diagnosis: Headache of Unknown Origin 2000

·         ITALY - Catania Polyclinic Hospital; Diagnosis: somatoform disorders. (Note: I was not even subjected to a psychiatric evaluation to justify this easy diagnosis). 2000

·         SPAIN, Barcelona eye examination: 2000

·         ITALY - Rome private clinic of a famous Neurologist ... Diagnosis: Painful Viral Fibromyalgia. 2001

·         SWITZERLAND Zurich Polyclinic Hospital, Diagnosis: Headache of unknown origin. 2001

·         ITALY - Siena Private Hospital, performed Discolisi (oxygen-ozone therapy). 2002

·         ITALY - Bologna University Hospital; Diagnosis: Spontaneous CSF hypotension 2007

·         ITALY - Milan, Carlo Besta Institute, Diagnosis: CSF hypotension is excluded but they did a BLOOD-PATCH  none-the-less. 2007

·         ITALY - Milan NIGUARDA hospital Diagnosis: Spontaneous low CSF pressure, they did a  second BLOOD-PATCH 2007

·         GERMANY - Hanover Polyclinic Hospital perform CSF scintigraphy; Diagnosis: Small CSF leaks. 2007

·         GERMANY Neurological Centre INI: they refute CSF leaks diagnosed at Hanover Hospital and I undergo a spinal angiography, CSF fistula suspected, diagnosis: Cephalitis of unknown origin 2007.

NOTE: I did not give the names of doctors because it serves little purpose.  They all did try to help – some more than others.

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TESTS PERFORMED:

·         Hemato-clinical tests (CT)

·         Protein electrophoresis (CT)

·         Lipasemia, amylase (CT)

·         Hepatitis B and C markers (CT)

·         Anti-chlamydial antibodies (CT)

·         Anti-HIV antibodies (CT and repeated in all admissions)

·         Urine analysis (CT)

·         Anti-rubella antibodies (ELISA) (CT)

·         Anti-varicella/zoster virus antibodies (CT)

·         Anti-measles antobodies (CT)

·         Anti-toxoplasma antibodies (CT)

·         Anti-Herpes virus 1 and 2 antibodies (CT)

·         Anti-smooth muscle antibodies (CT)

·         Anti-mitochondrial antibody (CT)

·         Anti-nuclear antibodies (CT)

·         Search for LE cells (CT)

·         Test for diagnosis of infectious mononucleosis (CT)

·         Rheumatoid factor (CT)

·         Anti-thyroglobulin antibodies . AbTg (CT)

·         Thyroid ultrasonography (CT)

·         Abdominal ultrasonography (CT)

·         Esophagogastroduodenoscopy (CT)

·         EEG-Hotel (CT)

·         Doppler of supraortic + transcranic vessels (CT)

·         Brain MR + angiography phases (repeated ten times and in different structures (Philips T5 Giroscan)

·         MRI cervical spine + dorsal + lumbar spine (repeated a dozen times in different venues) CSF examination 4 times (Catania Polyclinic Hospital, Polyclinic Hospital of Zurich, the rest do not remember exactly)

·         CT myelography (Bologna Polyclinic hospital)

·         Mielo RM

·         CSF scintigraphy

·         Spinal angiography

·         Brain + Cervical + Dorsal + Lumbar spine TAC

·         Cerebral Spect

·         BRAIN MRI study of cerebral perfusion

·         Neck CT without and with contrast

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Please send any information that may be of help to Paolo to Help@INOD.org and it will be forwarded to him.  Comments and messages are also welcome.