It's Official--Definite ALS

[sukilou]

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.

 

[Al]

Hi Lonna. Sorry about the news but as the doc says, hopefully you'll be a slow mover. Remember that attitude is important and to keep your sense of humor. You might need it.

AL.

 

[BethU]

Lonna, damn, I'm so sorry for the diagnosed. It sounds like your neuro is a peach ... great that you have someone who will listen and support you. Here's hoping for a slow progression and many good years ahead of you.

((((((hugs))))))))

 

[tmasters]

Lonna,

So sorry you got this diagnosis, but it sounds like you were sort of expecting it and you sure have a great attitude about it! I'll be praying that you're a slow progressor too.

I stalled for a while with the Rilutek and had 3 neuros telling me it was my decision but strongly recommending I take it. After all that I finally started about a month ago and no issues at all.

Keep the faith,
Tom

 

[hopingforcure]

Look at it this way, you have now become company of the nicest people in the world. I have met the nicest people since I have become sick.. Al is living proof that attitude is everything. But when you want to give em H-ll we will be here.. I want to let you know that UMN dominant is over the long term a reailly good sign. So take solace we are here for you, and cures are on the horizon, I feel it in my bones (Muscles).

 

[rose]

Lonna,

I'm sorry its "still" official. I agree with what others have already written here, if you have to have ALS, at least its UMN dominant, and you get to have cool internet friends 8) However, I'd be just as happy to be your friend if Dr Goslin had thought it something else!

(((HUGS!)))

 

[SteveS]

I feel your pain on the diagnosed. My wife was finally diagnosed with basically the same thing last week. It didn't come as much of a shock as we had already had a few months to filter it through and digest it. I am also a daily reader and thought I would start posting. The people here are very friendly and seem very willing to lend an ear if you need to vent. Keep the spirits high and live each day to it's fullest.

 

[lynster]

Lonna,

You will be in great hands with Dr. Goslin - she is our neuro, too! My husband was diagnosed last summer, and we just started the clinic. We really appreciate the availability of all of the team members at the clinic. They are there to answer all of our questions!

Who knows? We may see you at the clinic...

Lynn

 

[brendapals]

lonna,
hey there, well, damn, I hate it that you got the diagnosis, but I hope you are doing well. This forum is wonderful, full of a lot of stories, hints, jokes, laughs, cries, pretty much anything you might need, huh?
Seriously though, read and post when you can, and remember to make every day count, I will certainly keep you in my prayers,
brenda

 

[sukilou]

Thanks everyone for the hugs, smiles, support and welcome! I'm so very thankful that I was diagnoseded in this info/internet age. It must have been very lonely and isolating for Pals and Cals before the world wide web. Now I have new friends all over the world who are there for me with a touch of my fingers. A blessing, for sure.:-D