Capt. AL Dx with ALS again!
I just had a follow up visit with my Neurologist with the information I received from the ALS Clinic Doctor 3 weeks ago.
My Neurologist, Dr. Grow explained why she felt his possible diagnosed and recommended treatments would not work in my case.
I can not take the IVIG treatments because I have nerve damage to my bladder and my kidneys are in bad shape. I have almost gone into renal failure twice in the past due to high levels of cpk in the blood blocking the pores of the kidneys.
She said the IVIG was too big a risk because of the possible renal failure and also she had ruled out that treatment 2 years ago after she had been treating me for several months and saw the results of the NCS, FCV, EMG, and muscle biopsy.
She also said that when she first started treating me she saw the amount of fasciculation's I was having in both my legs and arms, and said this would not happen with the CIDP. She had also had an MRI of the upper spinal area, that I had forgotten about, and had ruled out any trouble with possible tumors or spinal cord involvement in the upper back or neck causing any of my symptoms.
She regretted to inform me that I definitely have ALS and the reason Dr. deAlvare had though I might have the CIDP was because he did not have all the records of the many tests she had performed on me over the past years, to make a proper DX.
For some reason the hospital had not sent all the records to Dr. deAlvare regarding my case, but had only sent the past year of records. DUH!
So, I am back to having a diagnosis of ALS.
I just wanted to bring you up to date on where I am in the progression of things. I know it sounds confusing, and it is for us. We are still considering possibly going to one of the major hospitals for further testing. Please pray for us that we may have guidance and peace in the midst of all this turmoil.
I'm sorry for getting everyone's hopes up for nothing. I just got so excited at the possibility that I had to share it with my friends here on the forum. I should have waited until all the information was in before mentioning this.