hi I am new to the forum. I am 58 years old I live in Johannesburg South Africa and have had the start of the symptoms in 2014 with my left hand starting to show weakness. My surgeon put this down to a trapped ulnar nerve in my left elbow. He then operated on it in June of 2015. Nothing changed and my left continued to weaken. In December of 2015 my family noticed my voice had started to change, A lot rougher and difficult to hear some words. In January 2016 I went to see a ENT who put it down to bad reflux. He prescribed medicines which again didn't help. In February 2016 I then went to a Neurologist who booked me into hospital to run the usual tests, MRI, X-Ray, Sonar, Spinal tap( This showed an elevation of protein in my spinal fluid)EMG and a battery of blood tests. All came back as negative. He then put me on a 5 day treatment of Steroids.
By the end of the week there was a slight improvement in my voice. I was told to go away and come back if there was any Deterioration. This was a bit disappointing as I wanted an answer.
I then went for a second opinion with another Neurologist in July 2016 who then booked me into Hospital to do a second Spinal Tap, Again the protein in my spinal Fluid was higher than normal, I think normal is 0.04 and mine both times was 0.06. This was followed by another battery of blood tests which again came back as negative.
The Neurologist stated that there were some anomalies and put me onto a 5 day IV of Polygam. He did say he wasn't looking for any improvements but rather no decline. This was to be followed up by a monthly top up for 6 months. I couldn't do the follow up treatments as my medical insurance ran out.
I went back to my Neurologist in January of this year where his report states I have probable ALS although it is not definite.
Since them I have noticed my Right hand is showing signs of weakening particularly when its cold.
Besides muscle twitches all over my body and cramps I am fine. I started getting pain in my Right Shoulder and left upper arm and started taking Cannabis oil and the pain has gone.
I walk every day about 3-5 km so my legs are fine. I would value your opinion and suggestions.