Discussions By Condition: Muscle conditions

Muscle wasting and no diagnosis

Posted In: Muscle conditions 0 Replies
  • Posted By: Lyndav001
  • December 3, 2013
  • 11:53 AM

My father (now 64) has had the following symptoms and is now almost wheel chair bound.

Initial symptom
Facial Numbness – one sided that then became the entire mouth and tongue. Patient has had a cough for many years.
Patient with an extensive history of traveling to 3rd world places for FISHING (fishing where one wades in water in very isolated areas) – Countries visited prior to symptoms starting: include: Angola, Zambia, Zimbabwe, Mozambique, Brazil (Amazon), New Zealand, Russia etc

August 2008 Patient visited the Zambezi river some 600kms north of Livingstone Zambia and during the 7 day fishing trip was violently ill. Severe stomach upset, vomiting, cramps and runny tummy. Roommate thought Patient was dying. Took about a week to recover – suspected that Patient had drunk contaminated water.

December 2009
GP sent Patient to Pulmonologist and ENT specialist for cough and numbness.
Suspected reflux, told to elevate bed, put on Nexiam for life. Adult onset asthma
Barium Swallow – Normal with sliding hiatus hernia (to rule out reflux causing symptoms)

February 2011
Patient felt severe stomach left sided pain – saw GP who was shocked at weight loss and sent for CT Abdomen and Pelvis Scan - all came back clear.

March 2011
ADMITTED – Neurologist 1, Neurologists
MR Brain – Normal
Lumber punch
Nerve conductivity tests
Chest X Ray – Normal
Liver enzymes Normal
CSF - Normal

Dr diagnosed possible Lymes Disease
Rocephin IV given for 10 days – definite improvement

10 May 2011 – Follow up with Neurologist 1
• Improvements in strength – upper and lower limbs
• Improvement in sensory around mouth
• Wt = 71.5kg
• Cough better – seen Pulmonologist – Allergies

9 November 2011
Neurologist 2 gave 90 % MND diagnosis.
Neurologist 1 disagreed

April 2012
Upper body weakened as well as numbness spread to entire head including ears.
Muscles wasted significantly – to the extent that showering and dressing difficult.
Eating has become very difficult - almost only able to swallow liquid food and eating soups and shakes only.

Have been sleeping every afternoon and not able to play golf in May.

If you have any idea of what is causing this please let me know. We have exhausted so many avenues and are desperate for help.

Thank you

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