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sisgldnhr

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CALS
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OHio
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Hi,

My husband has been ill since February of 07. At first they thought he had cancer of the stomach and colon only to find (Thank God!) that he had a bacterial infection! that was taken care of with meds. He had gotten down to 115 lbs from 155. He was gaining weight back, he got up up to 126 lbs and we thought he was on his way to getting better.
But looking back......we now see that while he had the infection problems, other problems were present as well. Weakness primarily in his left arm and pain in his neck. He started going to a chiropractor for that. After several treatments the chiro told us that something else was wrong. He sent us to the first Neurologist. He did muscle/nerve condition tests then sent us on to a larger medical facility. He told us that he was not qualified to diagnosis what he thought my husband had. So we got to the large facility and have the nerve/muscle conduction tests done again. This Neuro told us that its not ALS but it is something and that my husband has had it for awhile. So he sent us on to the Neuro-surgeon for the biopsies. Which will be done on Monday, Feb. 4th. This fellow told us that he thinks that it is ALS.
My husband (Don) has no reflexes in either arms, either ankles & one knee. He has cramping in his arms & legs...day & night. He has been on oxygen since Dec 27th. His oxygen level was down to 67%. Our family Dr. told us anything below 90% is dangerous. He has muscles twitching in his arms but he doesn't feel it. It was also noted at the surgeon meet & greet that his mouth is full of salvia now.
At this point..... we just don't know what to do or think. He is also down to 121 lbs.

I don't know how long the biopsy results take?

Any feedback would be greatly appreciated,

Sisgldnhr
 

CindyM

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I do hope they find something other than ALS! From what I've read around here, different labs have different time frames for getting out the results. But we will be here with you waiting for the answers and coping iwht whatever the future holds. I'm holding out for good news for you and your family! Cindy
 

sisgldnhr

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CALS
Diagnosis
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US
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OHio
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NW
Thanks so much Cindy! I pray that it isn't ALS. If it is......we'll do whatever we have to do.

I thank God every morning for a new day and all the new possiblities.

Sisgldnhr
 

fjmart

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01/2007
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Hi Cindy
I know what you are going through! My husband started having problems in Feb of 07 also. We thought he had a stroke because he had a severe head ache in the middle of the night. In Jan he was lifting 100 lb bails of hay on our farm and his mind was sharp. But by the end of Feb he could not lift more than 20 lbs. as the months have gone on his hands have become like claws and have continued to atrophy. He has gone from 180 to 150 Lbs. and his short term memory is gone. We are waiting for an appointment for a second opinion at an ALS facility in Portland, OR. My prayer is that it is anything but ALS, and can be treated. We anve a faith based network and are trusting in our Lord for healing I will add you and your husband to our prayer list.

God Bless and Keep The Faith Remember, "Where there is faith there is hope, where there is hope there is love , where there is love the is GOD".

Does anyone know if there are any drug trials in Oregon or if thee are any drugs available?
 

sisgldnhr

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Reason
CALS
Diagnosis
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diagnosis~~biopsy

Well he had his biopsies yesterday. The surgeon talked to me afterward and told me that he thinks that Don may have a skin disease as well because his skin was so thin that he said a piece of tape would have torn it.? He took a 2 1/2" section of nerve from Don's right calf. Then went on to his right upper arm & took a piece of muscle, he told me that Don's muscle had nearly no color. Again?
When we had our first consultation with this surgeon he told us that only 50 % of the people getting biopsied get a diagnosis. Have you ever heard of that before?

We go back on the 14th for a diagnosis.

Sis
 

crystalkk

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sis,

Did he say what it meant to have no color in the muscle?
Alot of biopsies do come back inconclusive.
What I don't understand is that you are getting results in 10 days... from what I read on other threads on this forum you can results for denervation fast, but it ususally takes about 4 wks to test all the stains
for other diseases.

If you are not satisfied, you can have the muscle sent to another hosp and have them look at it.
some people on this forum have done that as well.

You can do a search on the forum about muscle biopsies at the top of the page, and read other peoples
stories.

Did the nuero that sent you for the biopsy say what he thought it might be?
 

sisgldnhr

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Joined
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Messages
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Reason
CALS
Diagnosis
03/2008
Country
US
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OHio
City
NW
Crystal,

After my husbands nerve/muscle conduction test our neuro told us that it wasn't ALS....but that my husband has 'something' that he's had for a long time. What that something is we don't know. So he sent Don to a neuro-surgeon at the same facility. Telling us that they have their own Path Lab on site so that was a big plus.
When we had our appt. last Thursday with the surgeon and he examined him, he immediately said ALS. So I really don't know what to think at this point.

Thanks for pointing out that alot of muscle biopsies lack color. That had me worried quite a bit.

I didn't ask how long it takes for the results. When I picked my husband up in recovery the nurse told me that we had an appt. on the 14th of Feb. I wish that I would have asked!

Thanks for responding...

Sis
 

sisgldnhr

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Joined
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Messages
129
Reason
CALS
Diagnosis
03/2008
Country
US
State
OHio
City
NW
Dx

You're right Al...... they will not give me the biopsy results over the phone. She told me that we'll just have to wait until our appt. on the 14th. I asked then if she would fax the results to our family physcian. She told me that she'd have a nurse call me. Yeah right......just about when hell freezes over!

Sisgldnhr
 

CindyM

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Waiting is one of the hardest things to do, don't you think? I hope the tests come back with something conclusive and I hope it is not ALS!
 

sisgldnhr

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Joined
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Messages
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Reason
CALS
Diagnosis
03/2008
Country
US
State
OHio
City
NW
Dx

Waiting is one of the hardest things to do, don't you think? I hope the tests come back with something conclusive and I hope it is not ALS!

Absolutely Cindy! ...and then I think....do I want to know? I just hate the hurry up and wait. I guess this is where I am learning the art of 'patience'...

I pray that it isn't ALS.

sis
 

CindyM

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Oh I know that dilemma! My docs ask me if I am ready to repeat the tests, “to see if anything shows up by now.” Well, since we ruled out anyhting else, my answer for the moment is, "let's wait."
 

Lorie

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Sis

From everyone I have spoken to that has had a Muscle Biopsy. It takes about 4-6 weeks. It took about 4 weeks for Tim's (my brother). The Doc. said it had Characteristics of ALS. That was last summer. We have a Second opinion appointment in March.

All together Tim's had ALS 10 years. 3 years DX.


Good Luck! Get him checked for Lyme Disease!


Lorie:-D
 

ZenArcher

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PALS
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02/2007
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US
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PA
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McEwensville
The one thing I see regarding your husbands symptoms is the lack of reflexes. My reflexes are so hyper I feel like one of those field goal kicking toys. All you have to do is lightly hit my thigh and I kick away. I'm waiting for one of my girls to figure it out and see if they can make me punt one of the dogs across the living room. I hope whatever news you get is good.
 

sisgldnhr

Distinguished member
Joined
Feb 2, 2008
Messages
129
Reason
CALS
Diagnosis
03/2008
Country
US
State
OHio
City
NW
The one thing I see regarding your husbands symptoms is the lack of reflexes. My reflexes are so hyper I feel like one of those field goal kicking toys. All you have to do is lightly hit my thigh and I kick away. <<I'm waiting for one of my girls to figure it out and see if they can make me punt one of the dogs across the living room. >> I hope whatever news you get is good.


I sure hope that its good news too!



your << >> comment! lol...I could just see it as I was reading it! ....be gentle with that doggie of yours :-D


sisgldnhr
 

sisgldnhr

Distinguished member
Joined
Feb 2, 2008
Messages
129
Reason
CALS
Diagnosis
03/2008
Country
US
State
OHio
City
NW
From everyone I have spoken to that has had a Muscle Biopsy. It takes about 4-6 weeks. It took about 4 weeks for Tim's (my brother). The Doc. said it had Characteristics of ALS. That was last summer. We have a Second opinion appointment in March.

All together Tim's had ALS 10 years. 3 years DX.


Good Luck! Get him checked for Lyme Disease!


Lorie:-D


Lorie,

I'm amazed by that! They told us that they would have his results back in 4 days! I do know that they have a brand spanking new neuro path lab right on campus, could that be why we'd get it back so soon?
Also, when we go to the Dr. on the 14th I will say something to him about the Lyme Disease if they didn't get anything from the biopsies.
 
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