sukilou
Active member
- Joined
- Sep 12, 2008
- Messages
- 63
- Reason
- PALS
- Diagnosis
- 09/2008
- Country
- US
- State
- Or
- City
- Troutdale
Last Mon, Nov 10, I saw Dr. Kimberly Goslin, director of Providence ALS Center in Portland, Or. She did a clinical neuro exam and another EMG, and confirmed my ALS diagnosed by my general neuro. She then ordered more bloodwork (12 vials it took), a 24 hr urine test for heavy metals, and a pulmonary study. I saw her this morning for a followup. All my tests came back normal, and my FVC was at 98%. She gave me a diagnosed of UMN Dominant ALS, and I will be starting with the multi-disciplinary clinic shortly. My LMN involvement is, at this point, much less than the UMN, but she said that will progress. I like Dr. Goslin very much. She comes across with a very positive, supportive attitude and took her time answering my questions. I feel that I will be getting optimal care with her in charge.
However, and I think it's only human nature, but I wanted to hear that something else showed up in all the blood and urine tests to point to another, more treatable disease. I'm still in a little bit of shock emotionally even though my head accepts and understands what is going on. The good thing she said that she thinks (but does not promise) that I could be very slow progressing and that I am in the early stages of ALS. I am starting with a physical therapist right away to help with my mobility issues and range of motion. I'm starting Rilutek tomorrow. I have read the postings on this drug, and realize that I may have trouble tolerating it. Dr. Goslin told me that if it affected my quality of life because of side effects that it would not be worth continuing it. I appreciate her common sense approach, so I guess it's up to my body to see what happens.
I may not post often, but I read the forum every day, and find great support and info from everyone here. Thanks for listening.
However, and I think it's only human nature, but I wanted to hear that something else showed up in all the blood and urine tests to point to another, more treatable disease. I'm still in a little bit of shock emotionally even though my head accepts and understands what is going on. The good thing she said that she thinks (but does not promise) that I could be very slow progressing and that I am in the early stages of ALS. I am starting with a physical therapist right away to help with my mobility issues and range of motion. I'm starting Rilutek tomorrow. I have read the postings on this drug, and realize that I may have trouble tolerating it. Dr. Goslin told me that if it affected my quality of life because of side effects that it would not be worth continuing it. I appreciate her common sense approach, so I guess it's up to my body to see what happens.
I may not post often, but I read the forum every day, and find great support and info from everyone here. Thanks for listening.