Please help me to fight against motor neurone disease(ALS) | Milaap
Please help me to fight against motor neurone disease(ALS)
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Need Rs.70,000
  • Sachin

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    Sachin N
  • S

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    from Dakshina Kannada, Karnataka


My problem started and noticed when my age was 7. At starting symptom was noticed by seeing a mild foot drop in my right leg but i was doing all my usual work which all use to do. But i neglected thinking while playing my leg may be twisted . after one year the foot drop was noticed in my left leg also.  At that time i was in madikeri where good medical facility was not much available. When i consulted local doctor they told it may be calcium deficiency and gave some tablet. Again after 1year progress in foot drop was seen in both legs by noticing this i came to Mangalore to consult good Doctors and consulted Dr.Shankar(neurologist) he diagonised and told it might be some neuropathy disorder and inorder to confirm it he recommended to consult neurologist at NIMHANS Bangalore.  We went and consulted Dr.Anisha basanth(neurologist) she done NCV test and Blood test and gave the result as “Motor Neuropathy in lower limb” and told for now medicine or treatment is not available for now and she suggested to wear foot ankle splint to avoid foot drop and balance. After that we i came back from there but progression was gradually increasing like 5% progression for every 1year it was progressing very slowly. Because there was no medicine in allopathy i consulted Ayurvedic Doctors at “Kottakal ayurvedic hospital” Kozhikode and was doing some ayurvedic Massages and some ayurvedic treatments for satisfaction but there was no improvement progress in muscles weakness in legs was continueing . After that i was doing Oil Massage at Thelugu palayam at Coimbatore after the treatment here my leg progressed more, at that time my age was 15years. Because of high progression and when my right hand thumb lost flexing movement i consulted Dr.GRK Sharma St Johns Medical College Bangalore there they Diogonised again and the result was “Motor Axonal neuropathy in lower limb n upper limb” and Told us not to do oil massage because oil massage is an enemy for this diseases if we do it double progression will be there at that time my age was 16  but i was walking without support but i couldnt climb the stairs. When i was studing 11th Std i felt like i couldn’t walk without support and when i was in 12th std my right hand index finger and left hand thumb and index figer stopped working both extensor and flexar movement was lost and i was writing but using middle finger. When i was doin my 1st year BCA after 1st sem exam due to heavy writing and over stress on middle finger i lost ability to write after that from 2nd sem i used scribe to write my exams. By hearing about this my friend told me about a famous neurologist at KMCH Hospital Coimbatore “Dr. Arul Selvan” i contacted him to his mobile and forwarded my old reports through email and he refered and called us and rediagonised and done following test which is attached to this and the result was “MULTIFOCAL MOTOR NEUROPATHY” with no sensory loss and told treatment is available and given 1gm Reditux(rituximeb) injection which cost about 80000rs per inj after 3months about 30% improvement was seen .after 3 month 2nd dosage of same injection was given and he recommended to go to Physiotherapy inorder to improve muscle strength and activity after that my right hand middle finger improved with flexing movement and i am able to walk with little support after that i took 3rd dosage of injection and now he told to continue physiotherapy for nxt 6month. As he adviced i was continueing doing  physiotherapy .
          After 2nd and 3rd dosage of injection there was no improvement .3rd dosage injection was given in the month August 2012. After that since there was no improvement i stopped taking that injection . After that there was no progressing till 1 year.but this month progression started . now all fingers of my right hand and left hand has no movements.
From 3 months i feel my lung muscles are weakened and i feel difficulty in breathing. I had respiratory failure I need to buy bipap machine and oxygen concentrator as soon as possible
                                                                                                                                 Sachin N
Symptoms present till now
Right hand;-
Extensor and flexar movement is absent in wrist
Unable to extend fingers
Clawing of fingers
Wrist drop
Elbow flexion is weak
All finger has no movement
Left hand;-
Unable to extend fingers
Clawing of fingers
Elbow flexion is weak
All finger has no movement
Unable to climb stairs
Unable to walk
Sit to stand is not possible
Only mild response to the fingers is seen
Difficulty in breathing and coughing

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