Can anyone help for this incurable disease?

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SUMMARY

This discussion centers on a 35-year-old male from Pakistan suffering from progressive weakness in his lower limbs, initially starting in September 2009. The condition has deteriorated over time, affecting mobility and requiring the use of a stick for support. The poster seeks recommendations for doctors, particularly orthopedic or neurosurgeons, who can review his friend's medical reports and provide potential treatment options. The urgency of the situation is emphasized by the lack of available studies on the disease.

PREREQUISITES
  • Understanding of neuromuscular disorders
  • Familiarity with orthopedic and neurosurgical interventions
  • Knowledge of patient history documentation
  • Awareness of global medical resources and specialists
NEXT STEPS
  • Research potential treatments for neuromuscular disorders
  • Identify leading orthopedic and neurosurgeons specializing in rare diseases
  • Explore online medical forums for patient experiences and recommendations
  • Investigate international medical facilities offering advanced neuromuscular care
USEFUL FOR

Individuals seeking medical advice for rare neuromuscular conditions, healthcare professionals looking for case studies, and anyone involved in patient advocacy or support for progressive health issues.

saadatahmad
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hi to everyone,

I'm posting this here for one of my best friends in Pakistan. He has this disease and he thinks that it's incurable because doctors told him that there is no study available for his disease. I'm posting it here so that if anyone of you know any doctor who can view his reports and give his suggestion or can tell if it can be treated anywhere in the world.

Here is the short details of his disease.

"
Initially his Weakness started from the toes (Left side) in (Sep - Oct) 2009. He felt that the toes moved in downward direction with maximum force but did not move in upward direction and after 1-2 months it was progressed towards the upward motion of foot from ankle (Foot dropped till January 2010) then gradually whole leg started weakening and weakness was increased day by day.

Till (May – June) 2010, he couldn’t able to upstairs and couldn’t even raise his leg while sitting on chair. Afterwards the downward movement of toes diminished with time as well. It all happened gradually within almost 6-7 months.

In (May – June) 2010, weakness was started in right leg in the same pattern as he initially felt in his Left side. It also started from toes and now it is progressing vertically upward in right leg. He still feels this weakness in lower limbs. He dosn’t feel it in his arms still.

After 1 year his condition is so miserable that he can’t walk properly. He uses a stick in hand. He can’t stand up after sitting on the ground. His feet swells up while sitting more than 1 hour on the chair."

Short Details about my friend.

Sex Male
Age 35 Years
Marital Status Single
Occupation Geographic Information Systemm(GIS) Specialist
Surgeons Orthopaedic/Neurosurgeon

Thank you all in advance for taking your time to read this and for any possible help towards his treatment.


I can send my friend's full history and reports if someone wants to see or wants to forward it to a doctor he/she knows.

Please contact me if you know any surgeon who can be helpful.
 
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