Base

Name

Tomasz Boski

Nickname

tomasz-boski

Year of Birth

13.02.1950

Gender

Male

Location

Warsaw

Relationship

Patient

Short Bio

I was very healthy individual, maybe except the sensible GIT and pollen allergy. Well, during the stay in Afica I got some 20 malarias and hepatitis, most probably from non sterilized equipment. Had a very busy professional life at the university and in research activity with working days of up to 14 hours. I traveled a lot by plane during more than 30 years what brought me continuous frequent flyer benefits. It was good for enjoying lounges but probably less good for my health. In free time I practiced tennis, skiing, running and swimming. During the regular check-ups in the decade of 90′ I complained several times about cramps during night. I had some fasciculations too. Some 10 years ago I noticed, having sometimes “heavy legs” and my collaborators were noticing slightly skewed gait and slapping with right feet, probably dating back to 90 ties. In 2010 I noticed some difficulty in crossing legs and in the coming years I remember to loose easily right leg sandal when walking and also accumulating beach sand below the curved toes of the right feet. Tripping became repetitive 3-4years ago and fasciculations started in my right leg and abdomen. Probably they were there before but I found it normal part of my life. In 2015 I realized a clear decrease in energy when running. The EMR revealed small hernia L5-S1 at the beginning of 2016, which was operated in may 2016. It did not solve anything, but somehow the fasciculations ceased for 3 weeks. Probably due to anesthesia. The lack of progress in recovering my physical capacity made me think about electromyography and possible neurodegenerative condition. I requested EMG in October 2016, which led to the diagnosis of possible MND/ALS. The neurologist who did was a rude person and technically not very skillful. I repeated the electromyography in January 2017 and the diagnosis was the same: MND. In July 2018, after 1 week stay in Mayo Clinic the diagnosis became definitive. Over these 27 month in the diagnostic limbo my ALSFRS score evolved from 46 to 36. I had serious difficulties with walking since the beginning of 2018 and by June of that year I decided to retire from the university. At the same time I obtained 75% disability certificate. What actually contributed to the “onset” of MND/ALS in my case? Several factors probably contributed and namely: 1. Prolonged work in lab 2. Ski accident 3. Inflamatory conditions in spinal cord. Over two years, I spent quite a lot of time and money on consulting neurologists in 4 countries, and must say that it was quite useless wasting of money. Neurology is still very little scientific medicine: it is based on the description of some clinical macrosymptoms, and reflexes, unrelated to any molecular, biomedical characterization. The diagnostic process, which is done through successive elimination of other conditions with similar symptoms should be done in a multidisciplinary/ multispecialty environment but actually this rarely happens. MD’s are collecting the information from patients and recording the exams in a ridiculously antiquate way, compromising any further serious statistical treatment, which could lead to some objective classification of main types of ALS/MND. The underlying causes of all major neurodegenerative diseases are unknown and therefore the search for cure is almost random. The replication of completely inconclusive studies based on mouse models , evoking the responsibility of one or another gene, fills the pages of journals around the world and did not offer any good perspective for a therapeutic success. In that sense, the content of presentations during the ALS/MND symposia is self explanatory. I strongly believe that despite this grim scenario the solution will be found, probably by chance, like in case of viagra or penicillin.

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How long have you or the person that you are caring for had ALS?

3 yeaars since diagnosis, 20 years of symptoms

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