A full medical update

Here is where we are as far as an official diagnosis.

After my EMG, my neurologist had the preliminary report and based on what he saw it looked much more like an autoimmune disorder like Myasthenia Gravis. They took a lot of blood that day to check for an autoimmune disorder. This last Tuesday I went back to the Neurologist to get the blood results.

All of the test results came back negative. He also had the full EMG report and he said that the UCI clinic saw abnormalities but he thought they were being extremely picky. With these results back there are not any other conditions left that describe my symptoms other than ALS. He is doing a chest CT scan since that is the last area where they have not checked for tumors and he also put me on a medication that is used to treat Myasthenia Gravis.

I was told to expect a little improvement from the medication since it strengthens the muscle nerve receptors and amplifies them. Even with ALS there could be some improvement with the medication. If what I actually have is Myasthenia Gravis he told us we would notice a huge improvement. After being on the medication there has been a slight and inconsistent improvement, but nothing significant.

The needle portion of the EMG test was horrific for me and the neurologist on Tuesday just wanted to do 1 needle. We were surprised when he put it into my right arm since that arm is still strong. After that 1 needle the Dr said that the test results were abnormal which is indicative of ALS.

I have noticed that my slurred speech increases when I cry or am emotional and my sinus' run heavily when I am slurring. Today I went and saw my Ear, nose, and throat specialist to be sure there was not some sort of sinus condition that would at least perhaps explain why my speech has progressed so quickly. During the examination he saw fasciculations on my tongue which are expected with ALS and explained that since I am losing control over those muscles it makes my sinus' seem worse because my tongue and throat are not working the same. He concluded that I look like typical ALS.

I have my first Dr apt with Dr. Mozaffar of the UC Irvine ALS and Neuromuscular Center tomorrow. WE will be getting a second opinion and meeting the team at UCI that will help me maintain the best quality of life possible.