Questions related to my research on Ataxia, and more particularly ILOCA

This questionnaire was prepared under the supervision of two neurologists, one of which is a researcher in genetics. Most Ataxia sufferers have genetic malformations which could have been caused by non-hereditary conditions. This hypothesis will guide our research and will help us shed light on the links between previous activities and the symptoms generated by Ataxia. (However, the cause and effect relationship between the symptoms and the product handled will be harder to prove, without a shadow of a doubt, if the ILOCA Ataxia has been diagnosed by a physician.) When the product at the origin of the Ataxia symptoms is discovered, it will be easier to guide the medical research more accurately once the cause and effect link is found. This analysis, using the database, will help greatly.

By filling out the enclosed questionnaire, you will increase the odds of a medical research breakthrough and you will help improve our situation. These answers will increase and further enhance the knowledge in many fields and who knows; maybe it will give us the possibility to assert our rights in this society.

Confidentiality :

The data collected will be used for research purposes only. Your e-mail address will not be transferred without your written consent. Furthermore, it will be used only if absolutely necessary for such thing as asserting their rights.

Your E-Mail Address
Enter your e-mail address :

Coordinates

Address (CO)

Sex (SE)

 male female

Approximate age when the Ataxia was diagnosed (AG)

Total number of years since your Ataxia diagnosis (AN)

Life Habits

Average weekly alcohol consumption (number of beers) (QB)

Medication received, symptoms demonstrated and target period : estimated seriousness for the first three years (MC)

Medication received, symptoms demonstrated and target period : estimated seriousness for the next two years (MD)

Previous Operation(s)

Gallblader (OV)

 yes no I don't know

Approximate number of  years since the operation (ON)

Important Note (1): the suspected agent could be radioactive or environmental-related. A strong or very volatile odour.

Activities

Main activity : no possible contact with any product because of the type of work performed (PI)

 yes no I don't know

Secondary activity : possible contact with any product because of the type of leisure or sport activities performed (SP)

 yes no I don't know

Family of the Ataxia Sufferer

Number of children in the family of the main Ataxia (FT)

The mother or father of the main Ataxia sufferer had a known hereditary form of Ataxia (medical diagnosis) (FP)

 yes no I don't know

Approximate age of the oldest children (FV)

Approximate age of the youngest children (FJ)

At least one of the brothers or sisters of the main Ataxia sufferer had a known hereditary form of Ataxia (medical diagnosis) (FF)

 yes no I don't know

The main Ataxia suffering has a known form of hereditary Ataxia (medical diagnosis) (FH)

 yes no I don't know

Total number of  brothers and sisters suffering from Ataxia (medical diagnosis) (FD)

Total number of  brothers and sisters suffering from Ataxia (undiagnosed) (FN)

Children and Grand-Children

Number of children from this union (ET)

Approximate age of the children (EA)

Number of children suffering from Ataxia (diagnosed) (ED)

Number of children suffering from Ataxia (undiagnosed) (EN)

Number of grand-children (PT)

Approximate age of the grand-children (PA)

Number of grand-children suffering from Ataxia (diagnosed) (PD)

Number of grand-children suffering from Ataxia (undiagnosed) (PN)

First Cousins

Approx. number of first cousins (male and female) (CT)

Total number of diagnosed Ataxia sufferers (medical verdict) among your first cousins (male and female) (CD)

Total number of undiagnosed Ataxia sufferers among your first cousins (male and female) (CN)

Important Note (2) : Parent birthplace (due to consanguinity – possible historically)

Parent Birthplace

Country of birth of the father : for example : Ca Be, Fr, Us…etc. (enter the country abbreviation) (PP)

Region where he was born. Indicate the nearest larger city easily accessible (for example, instead of St-Jean Chrysostome, I will enter Quebec due to its proximity) (PR)

Country of birth of the mother : for example : Ca Be, Fr, Us…etc. (enter the country abbreviation) (MP)

Region where she was born. Indicate the nearest larger city easily accessible (for example, instead of St-Jean Chrysostome, I will enter Quebec due to its proximity) (MR)

Consanguinity not probable (CG)

 yes no I don't know

On Your Iloca

The year when the ILOCA was diagnosed after the start of the alleged incident (medical diagnosis) (IN)

Diagnosed with Ataxia of unknown cause (ILOCA) (IO)

 yes no I don't know

Approximate age when your ILOCA was diagnosed (AI)

Evolution of your Ataxia (ILOCA) towards MSA (medical diagnosis) (MA)

 yes no I don't know

The year when MSA (multi systems atrophy) was diagnosed after the diagnosis of ILOCA (MN)

The year when MSA  was diagnosed after the start of the alleged incident (MQ)

Important Note (3): Ataxia Origin: It is generally hereditary or of unknown origin in the case of Iloca. In the first case, the genetic malformation is the root of our hypothesis. Since Iloca is the main focus of this research, it should easily come up among all Ataxia sufferers. If you are sure that your syndrome is hereditary (frequent cases of Ataxia sufferers in families or undeniable diagnosis), do not answer the following questions. Diagnosis errors are still possible and the problematic cases can be found through computer science.

Note (3) (Cont’d – 1): our Iloca shows an evolution towards MSA (Multisystem atrophy), which re-affirm our hypothesis of an acquired genetic mutation that caused our Ataxia. The cause and effect relationship between our Iloca and our symptons must be proven. The evolution of our Ataxia was confirmed by a neurologist. We even met another genetic researcher. Using the database, all main symptoms can be put in relation with any other factor, shedding more light on Ataxia and Iloca in particular. The most significant Iloca symptoms can be exposed easily and the Ataxia sufferers can compare their symptoms with those of others.

(Note (3) (Cont’d – 2): a range of statistics is simultaneously possible for several variables. Others can be created and relationships can be made between them. The symptoms are classified as such: 1 = minimal; 2 = average; 3 = high; n = not applicable or negative. If you cannot answer the question, leave it blank. If you prefer not to answer the questions on symptoms, you can stop here

Symptoms of to my ILOCA

Appetite and Body Weight

Loss of appetite and weight : the first three years following the alleged incident (R3)

Loss of appetite and weight : the next two years (R2)

Nausea even in high winds : the first three years following the alleged incident (J3)

Nausea even in high winds : the new two years (J2)

Blood Circulation

Swollen feet when sitting for a long period of time : the first three years after the alleged incident (P3)

Swollen feet when sitting for a long period of time : the next two years (P2)

Energy

Decline energy : the first three years following after the alleged incident (É3)

Decline energy : the next two years (É2)

Dizziness and Loss of Balance

Walking with a cane (refer to the loss of balance question) : the first three years after the alleged incident (A3)

Walking with a cane (refer to the loss of balance question) : the next two years (A2)

Walking with a walker (refer to the loss of balance question) : the first three years after the alleged incident (K3)

Walking with a walker (refer to the loss of  balance question) : the next two years (K2)

Limited movement (refer to the loss of  balance question): the first three years after the alleged incident (L3)

Limited movement (refer to the loss of  balance question):  the next two years (L2)

Support bars at home (refer to the loss of  balance question) : the first three years after the alleged incident (B3)

Support bars at home (refer to the loss of  balance question) : the next two years (B2)

Wheelchair: the first three years after the alleged incident (H3)

Wheelchair: the next two years (H2)

Home personal care (refer to the seriousness of the Ataxia) : the first three years after the alleged incident (SO)

Home personal care (refer to the seriousness of the Ataxia) : the next two years (SR)

Glands

Gustatory, olfactory and lachrymal glands dysfunction (mostly at mealtime) : the first three years after the alleged incident (Y3)

Gustatory, olfactory and lachrymal glands dysfunction (mostly at mealtime) : the next two years (Y2)

Sex glands dysfunction : the first three years after the alleged incident (X3)

Sex glands dysfunction : the next two years (X2)

Muscles

Increasing muscular weakness : the first three years after the alleged incident (U3)

Increasing muscular weakness : the next two years (U2)

Lower back pain : the first three years after the alleged incident (D3)

Lower back pain : the next two years (D2)

Salivary discharge during the night: the first three years after the alleged incident (C3)

Salivary discharge: the next two years (C2)

Hiccups (occurring at any time) : estimated seriousness  for the first 3 years (HO)

Hiccups (occurring at any time) : estimated seriousness for the next 2 years (HP)

Nervous System

Startle response in bed : the first three years after the alleged incident (S3)

Startle response in bed : the next two years (S2)

Decline in motor functions : the first three years after the alleged incident (E3)

Decline in motor functions : the next two years (E2)

Increased emotional sensitivity : the first three years after the alleged incident (O3)

Increased emotional sensitivity : the next two years (O2)

Cognitive decline : the first three years after the alleged incident (N3)

Cognitive decline : the next two years (N2)

Peristalsis

Flatulence when changing position : the first three years after the alleged incident (F3)

Flatulence when changing position : the next two years (F2)

Choking (mostly at mealtime) : estimated seriousness for the first 3 years (G3)

Choking (mostly at mealtime) : estimated seriousness for the next 2 years (G2)

Headache

Headache (may concern other people, not just the Ataxia sufferer) : first three years following the alleged incident (T3)

Headache (may concern other people, not just the Ataxia sufferer) : the next two years (T2)

Bladder

Reduced micturition : the first three years following the alleged incident (M3)

Reduced micturition : the next two years (M2)

Occasional incontinence : the first three years after the alleged incident (I3)

Occasional incontinence : the next two years (I2)

Voice

Just like inebriation : the first three years after the alleged incident (V3)

Just like inebriation : the next two years (V2)

Vision

Decreasing vision: the first three years after the alleged incident (ZX)

Decreasing vision: the next two years (ZY)

Other Symptom(s)

Other symptom(s) : add any other symptom(s) that are not indicated in the listing (SY)