Last year(2018) in January after long term(6years) with als my wife’s mother has passed away(no respiratory, no peg).
My wife Anna (36 years old) was very closed to her mum and was hit very hard by her illness and death.
In February Anna started to notice tingling sensation and cramps in her arms, but they were gone after 3-4 weeks.
In April she joined the gym. Anna has never before attended any gym or done any physical exercises.
In May Anna started to develop nettle-rash like spots on her face, neck line and hands. The rash tended to disappear after 15 min.
In June Anna had a bicycle accident in which she hit her head. After that she’s had a very bad head ache for 2-3 days.
The nettle-rash appeared again and Anna had a bioresonance therapy done. In the result she was diagnosed with borreliosis, chlamydia, mycoplasma, HPV human papilloma virus, herpes
progenitalis, irritable bowel syndrome and many more.
Anna had a nervous breakdown and wouldn’t stop crying for few days.
My wife is a pessimist person and suffers from anxiety but also she love healthy life style, healthy eating.
Anna and I went for consultation with a specialist who is also a member of ILADS.
We have been told that if there are no usual symptoms of disease there is no need for any medical treatment.
Anna had a test done for any autoimmune disease which came out positive.
We went to see yet another borreliosis specialist. Once again we have been told to leave it alone, that Anna should calm down, relax because it is all in her head and she has an early
stage of depression.
By the end of July Anna started to notice shaking in her legs and arms.
On 20th August we went for another consultation with specialist Neurologist who confirmed what we have been told before, that my wife should relax but also confirmed some somatic diseases.
On 15th September we had a consultation with another Neurologist. This time he confirmed that it might be a neurological disease also possible Amyotrophic Lateral Sclerosis. Also muscular
dystrophy was confirmed as Anna was unable to move her fingers in her left hand.
At the beginning of October Anna had ENG and EMG test done. It confirmed that she has nerve damage in both her arms and left leg. No damage in her spine, no motor neurons damaged.
She also had MRI scan done which didn’t show anything alarming.
I’m trying to explain to Anna that it may not be ALS. One of polish best Neurologist has ruled out any neurological disease but confirmed like other ALS specialist that it is all created
in Anna’s head.
Since Christmas Anna has had a physiotherapy and now she can move her fingers and she has rebuilt muscles in her hand.
In October 2018 if taking the supplements (1g B3 niacin) she had a niacin flush and after that her speech got worst also her walking and she has less feeling in her arms. Anna’s health is
deteriorating very fast.
Also we have been trying for a baby for 6 years but with no results. We had all fertility test done but all came out good.
We are trying to lead a healthy life and eat organic food. We avoid gluten, dairy produce and pork.
My wife always suffered from anxiety attacks. She has a fear of flying, fear of driving.
Anna is a lawyer and has her own practice. She loves her job, but was always anxious to take any complicated cases and used to wake up during the night with panic attacks just to check if
all paperwork was correct.
She has developed obsessive compulsive disorder ( OCD ), especially cleaning, but a as child she was very messy.
Two years ago she was diagnosed with myoma. The cyst was 70mm big. She was advised to have it removed but because of her health we decided to not to go with it.
Anna was convinced she would die and started more often talking about death.
Last year she had a vaginal fungal infection. It lasted around 2-3 weeks.
In February this year in hospital they did all tests and all motors neuron damaged, pyramid symptoms and bulbar.
End of April she got pneumonia and went to hospital, she was in induced coma and intubated. Now she can not breathe alone by the invasive tracheostomy respirator. She lost memory and she doesn't remember anything after holiday last year when got first symptomps. Now she can't move a finger in hand or legs, just blink eyes.
Anybody now a rapid case like that? After parent died and immediately child gets the als symptoms? Please help me
Summary:
the first symptoms July 2018,
October 2018, anyone motor neurons damaged
February 2019, all 3 neurons damaged with reinversions, bulbar, gm1 and gq1b antibodies positive in igm, blood csf barrier disorder
June 2019, just emg test, confirmed als strong without any reinversions
My wife Anna (36 years old) was very closed to her mum and was hit very hard by her illness and death.
In February Anna started to notice tingling sensation and cramps in her arms, but they were gone after 3-4 weeks.
In April she joined the gym. Anna has never before attended any gym or done any physical exercises.
In May Anna started to develop nettle-rash like spots on her face, neck line and hands. The rash tended to disappear after 15 min.
In June Anna had a bicycle accident in which she hit her head. After that she’s had a very bad head ache for 2-3 days.
The nettle-rash appeared again and Anna had a bioresonance therapy done. In the result she was diagnosed with borreliosis, chlamydia, mycoplasma, HPV human papilloma virus, herpes
progenitalis, irritable bowel syndrome and many more.
Anna had a nervous breakdown and wouldn’t stop crying for few days.
My wife is a pessimist person and suffers from anxiety but also she love healthy life style, healthy eating.
Anna and I went for consultation with a specialist who is also a member of ILADS.
We have been told that if there are no usual symptoms of disease there is no need for any medical treatment.
Anna had a test done for any autoimmune disease which came out positive.
We went to see yet another borreliosis specialist. Once again we have been told to leave it alone, that Anna should calm down, relax because it is all in her head and she has an early
stage of depression.
By the end of July Anna started to notice shaking in her legs and arms.
On 20th August we went for another consultation with specialist Neurologist who confirmed what we have been told before, that my wife should relax but also confirmed some somatic diseases.
On 15th September we had a consultation with another Neurologist. This time he confirmed that it might be a neurological disease also possible Amyotrophic Lateral Sclerosis. Also muscular
dystrophy was confirmed as Anna was unable to move her fingers in her left hand.
At the beginning of October Anna had ENG and EMG test done. It confirmed that she has nerve damage in both her arms and left leg. No damage in her spine, no motor neurons damaged.
She also had MRI scan done which didn’t show anything alarming.
I’m trying to explain to Anna that it may not be ALS. One of polish best Neurologist has ruled out any neurological disease but confirmed like other ALS specialist that it is all created
in Anna’s head.
Since Christmas Anna has had a physiotherapy and now she can move her fingers and she has rebuilt muscles in her hand.
In October 2018 if taking the supplements (1g B3 niacin) she had a niacin flush and after that her speech got worst also her walking and she has less feeling in her arms. Anna’s health is
deteriorating very fast.
Also we have been trying for a baby for 6 years but with no results. We had all fertility test done but all came out good.
We are trying to lead a healthy life and eat organic food. We avoid gluten, dairy produce and pork.
My wife always suffered from anxiety attacks. She has a fear of flying, fear of driving.
Anna is a lawyer and has her own practice. She loves her job, but was always anxious to take any complicated cases and used to wake up during the night with panic attacks just to check if
all paperwork was correct.
She has developed obsessive compulsive disorder ( OCD ), especially cleaning, but a as child she was very messy.
Two years ago she was diagnosed with myoma. The cyst was 70mm big. She was advised to have it removed but because of her health we decided to not to go with it.
Anna was convinced she would die and started more often talking about death.
Last year she had a vaginal fungal infection. It lasted around 2-3 weeks.
In February this year in hospital they did all tests and all motors neuron damaged, pyramid symptoms and bulbar.
End of April she got pneumonia and went to hospital, she was in induced coma and intubated. Now she can not breathe alone by the invasive tracheostomy respirator. She lost memory and she doesn't remember anything after holiday last year when got first symptomps. Now she can't move a finger in hand or legs, just blink eyes.
Anybody now a rapid case like that? After parent died and immediately child gets the als symptoms? Please help me
Summary:
the first symptoms July 2018,
October 2018, anyone motor neurons damaged
February 2019, all 3 neurons damaged with reinversions, bulbar, gm1 and gq1b antibodies positive in igm, blood csf barrier disorder
June 2019, just emg test, confirmed als strong without any reinversions
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