Dx-Day

[tmasters]

Today it's official. I went to the ALS clinic at UCLA and Dr. Graves gave me the bad news in a very subtle way. (I had to drag it out of him.)

So I've been showing symptoms of progressive weakness now since June '07 and after several neurologist visits and a couple visits to UCLA, I received what I didn't want, but what I knew in my heart was coming. It's just that I didn't know it was coming so soon.

Though I have presented LMN signs in the past, this is the first time that he's seen an increase in reflexes and some muscle stiffness (spacticity?). That, coupled with my failure to respond to IVIg, made his mind up.

On the bright side, I'm progressing very slowly and I feel pretty good and my spirits are pretty high. I still have a lot of living to do!

Thanks to everyone on this site for all the support and all the valuable information I've gotten this past 7 months.

Keep the faith,
-Tom

 

[elliekusa]

Tom,

I am so sorry for your "official" diagnosis. You have a GREAT attitude and I am happy that it is progressing slowly.

You are definitely in the right place on this forum....there are so many wonderful people.

Take Care,

Ellie

 

[wright]

Keep that great attitude, Tom. You inspire so many on here, including myself.

 

[Sammantha]

Sorry about the diagnosis but you are a very handsome man and your wife looks lovely. Best Wishes, Sammantha

 

[joelc]

Sorry about your diagnosis, but it is great you are progressing slowly!

Thankfully we live in a time where technology has advanced to a point where we can survive and communicate quite nicely for a long long time! I plan on being around for at least another 20 years!

 

[lostinlouisville]

Tom

I am sooo sorry about your Dx. I too admire your attitude. I will keep you in my prayers.

 

[sharonca]

So sorry to hear of you diagnosed. Dr Graves is my doctor also. I find him to be very informative and compationate. And the team there also. They say that I challenge them with my questions and research. Let's keep them on their toes. Have you asked about the diaphragm pacing trial? I had to ask to be put on the list.

Sharonca

 

[BethU]

Tom, I'm so sorry for the diagnosed ... but "very slow" progression is encouraging. So much research is being done, and the answers may be getting closer. Hang in there.
BethU

 

[JohnMc]

Tom

I often wonder how it would feel to finally get the 'answer'.

Sorry you didn't get the answer you wanted, but I am glad to see you with a positive attitude.

God bless you

John

 

[brendapals]

Tom,

I too am sorry you got your diagnosed. I hope you have a bit of stress relief finally getting an answer, and keep up the PMA- positive mental attitude- I find that helps me every day!

Hugs and prayers,
Keep the faith,
brenda

 

[Peg B]

Dear Tom,

You know, I too am so very sad and sorry to hear about your DX. I certainly appreciate your input here on MMN and in general on the forum. Please keep us updated and know you are in my prayers. Sincerely, Peg

 

[freddiesnetty]

I'm sorry to hear you say those words....I too remember that day they told us.......aarrgghh But alot of things are in the attitude and stress will speed things along....So my advice to you is to just live, God already has a plan for all of us.........So just keep on living.......I hope to go down this journey with you as these folks here have done for me..........I couldn't get through the day without these folks around here..........There is alot of love here........Thanks to all that have been with me on my tough journey....I couldn't of made it with out yall......
My prayers are with you! God Bless You!
Sincerely.
netty

 

[laurel]

I feel sad reading your news Tom. But you say things are progressing slowly which is very good. I just said a prayer for you that your progression remains very slow. Take care and thanks for letting us know.
Laurel

 

[crystalkk]

Tom,

I am sorry about your diagnosed. Keep the good spirits up!

 

[tmasters]

Thank you all so much for your thoughts of hope and encouragement.

Sharon: thanks for mentioning the diaphragm pacing trial, I wish I had! Maybe it's not too late. I like the staff there, too. But I was pretty disappointed in my FVC score of 78%. I've never been measured before and maybe I did it wrong. The RT said he would get my score up next time. Not sure what he can do about it; probably just being optimistic.

Thanks all,
-Tom