Living with ALS

Taigen (Oct 25, 2009 2:17:24 PM)
(This user has entered Living with ALS)

Jim_VA (Oct 25, 2009 2:17:51 PM)
Hi Bev

Taigen (Oct 25, 2009 2:18:00 PM)
Hey Jim...how are things?

Jim_VA (Oct 25, 2009 2:19:54 PM)
how are you I am fine ty

Taigen (Oct 25, 2009 2:20:33 PM)
I saw the other Dr....they are going to ran some more tests (blood, emg,NVC) and want to do another MRI with contrast and a lumbar puncture. RIght now we are looking at a type of SMA but they are also looking at auto immune based disease..

Taigen (Oct 25, 2009 2:22:16 PM)
So we are hoping for some of those tests to come back postitive and have some sort of treatment option. He said if not then we are looking a slow variation of the disease.

Jim_VA (Oct 25, 2009 2:22:47 PM)
progress huh

Taigen (Oct 25, 2009 2:23:38 PM)
yeah I'm glad I went...just wish I had a better report

Jim_VA (Oct 25, 2009 2:25:11 PM)
I certainly hope that it is not als

Taigen (Oct 25, 2009 2:25:41 PM)
yeah so do I

Taigen (Oct 25, 2009 2:26:23 PM)
we are hoping the blood will show an auto immune type of thing and can be treated with drugs.

Taigen (Oct 25, 2009 2:27:23 PM)
keeping my fingers crossed

Taigen (Oct 25, 2009 2:27:37 PM)
brb...

Jim_VA (Oct 25, 2009 2:28:23 PM)
you deserve something treatable :-)

Taigen (Oct 25, 2009 2:28:40 PM)
don't we all!!

Jim_VA (Oct 25, 2009 2:29:15 PM)
yes

Taigen (Oct 25, 2009 2:29:50 PM)
only been a little over a week since the letter came so I am trying to keep postitive that it will be something treatable...but as my doc says a lot of these tests were already done

Taigen (Oct 25, 2009 2:31:48 PM)
So how are things with you? I came to chat last week but no one was here

Jim_VA (Oct 25, 2009 2:33:00 PM)
they have started stem cell research here

Taigen (Oct 25, 2009 2:33:20 PM)
wow that is exciting news

Jim_VA (Oct 25, 2009 2:35:07 PM)
fine I am back in Florida

Taigen (Oct 25, 2009 2:35:24 PM)
is that at the clinic you use?

Taigen (Oct 25, 2009 2:35:48 PM)
Lucky you to be in Florida...nice warm sunshine

Jim_VA (Oct 25, 2009 2:35:58 PM)
until April

Jim_VA (Oct 25, 2009 2:36:28 PM)
lol

Taigen (Oct 25, 2009 2:36:35 PM)
We had torrential rains last night and we flooded AGAIN! Luckily they hadn't finished the repairs from the last hurricane damage

Jim_VA (Oct 25, 2009 2:37:30 PM)
wow

Taigen (Oct 25, 2009 2:38:04 PM)
in town the roads etc. are closed from flooding...and this was just a heavy storm not a hurricane

Taigen (Oct 25, 2009 2:40:09 PM)
have you ever had a lumbar puncture? I told the doc I really don't want one, they make me nervous, but I really want some answers too. Just scared I guess

Jim_VA (Oct 25, 2009 2:40:31 PM)
they can get bad up there

Jim_VA (Oct 25, 2009 2:43:00 PM)
a spinal tap yes

Jim_VA (Oct 25, 2009 2:43:38 PM)
nothing to it

Taigen (Oct 25, 2009 2:43:41 PM)
how was it?

Taigen (Oct 25, 2009 2:44:19 PM)
okay...I am just a scardy cat I guess LOL

Jim_VA (Oct 25, 2009 2:47:27 PM)
they used 3 needles 2 had numbing stuff

Jim_VA (Oct 25, 2009 2:49:14 PM)
I never felt a thing

Taigen (Oct 25, 2009 2:49:32 PM)
it will take months to get the appt. anyway so I should try to stop worrying about it. Just can't imagine laying still while they stick a needle in my back. And I'm not even afraid of needles.

Jim_VA (Oct 25, 2009 2:51:37 PM)
an Ausie did it

Taigen (Oct 25, 2009 2:52:20 PM)
haha...maybe he had the knack for it , hopefully whoever does mine will too!

Taigen (Oct 25, 2009 2:52:51 PM)
do you go to Florida every year?

Jim_VA (Oct 25, 2009 2:54:09 PM)
he was a youngster

Taigen (Oct 25, 2009 2:55:07 PM)
Hope you took it easy on him and taught him the right way to do things!!

Jim_VA (Oct 25, 2009 2:56:02 PM)
yes we have a condo here

Taigen (Oct 25, 2009 2:56:57 PM)
it's nice that you are able to go there. Bet it is something you look forward to

Jim_VA (Oct 25, 2009 2:58:37 PM)
yes long drive

Taigen (Oct 25, 2009 2:59:26 PM)
oh you drove? How long did that take?

Jim_VA (Oct 25, 2009 3:00:00 PM)
14.5 hours

Taigen (Oct 25, 2009 3:00:44 PM)
wow that is quite a drive for you

Jim_VA (Oct 25, 2009 3:01:24 PM)
my youngest son drove]

Taigen (Oct 25, 2009 3:02:13 PM)
how is your son doing that wants to teach, did he ever get the paper work he needed?

Jim_VA (Oct 25, 2009 3:04:05 PM)
he is teaching special ed

Taigen (Oct 25, 2009 3:04:54 PM)
oh good...I think the last time we talked he was waiting for his old company to sign off on him or something like that. SO glad he is getting to do something he enjoys.

Jim_VA (Oct 25, 2009 3:06:38 PM)
at a high school

Taigen (Oct 25, 2009 3:07:08 PM)
They will keep him on his toes

Jim_VA (Oct 25, 2009 3:07:45 PM)
he`got 1/w

Taigen (Oct 25, 2009 3:09:16 PM)
I work with the little ones and they keep me busy

Taigen (Oct 25, 2009 3:11:09 PM)
Well I must go for now, supper is in the oven almost ready, spagetti and meatballs tonight.

Taigen (Oct 25, 2009 3:11:44 PM)
Nice to talk with you again, I will stop back again sometime. Take care Jim

Jim_VA (Oct 25, 2009 3:11:57 PM)
1/2 a million out

Jim_VA (Oct 25, 2009 3:12:27 PM)
k

Taigen (Oct 25, 2009 3:12:33 PM)
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Jim_VA (Oct 25, 2009 3:14:23 PM)
Hib

Ravenp99 (Oct 25, 2009 3:32:55 PM)
(This user has entered Living with ALS)

Ravenp99 (Oct 25, 2009 3:33:06 PM)
Hi

Jim_VA (Oct 25, 2009 3:33:40 PM)
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Ravenp99 (Oct 25, 2009 4:06:17 PM)
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pete46 (Oct 25, 2009 4:14:16 PM)
(This user has entered Living with ALS)

pete46 (Oct 25, 2009 4:53:12 PM)
''

pete46 (Oct 25, 2009 4:53:29 PM)
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