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shelly2612

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Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
hello everyone, I am writing for my husband, in August of 2007he began seeing his PCP for severe cramping in his legs, he was prescribed Restalin, no help, all blood test were negative for any inflammation, he seen her for approx 3 months every two weeks, he finally became discouraged and said he would have to live with them. Since that time they have been a constant daily and nightly occurance, in January of 2008 he began noticing a decrease in the strength in his hands, now in his arms and shoulders, in the last two months he has had difficulty breathing, has been to his PCP again and been tested for pulmonary problems, and cardiac problems, both normal, his Cardiologist explained that it wasn't his heart or lungs, but a weakening in the muscles of his chest that was causing the breathing issues, we now have an appointment at the OSU Department of Neurology with Dr. Steven Kolb, the symptoms are pointing to a diagnosed of ALS, but we are praying for a different diagnosed, the following are symptoms he has noticed
1. extreme fatigue
2. morning headache
3. difficulty breathing
4. muscle cramping
5. weakness in hands, arms and shoulders
6. jumping muscles, like worms crawling under his skin
7. sleepy all the time
8. his voice is muffled, not as loud even when he tries to project
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi shelly

sorry to hear about your husband,i pray too for you that its not als.
i suspect it will take a while for further tests when he see's the neuro before getting a definate diagnosed.
there are many here who can answer any questions you may have in the mean time.
take good care of yourselves.
caroline:)
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
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State
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Hi Shelly- I hope it is not this, also. He'll be in good hands at the clinic. Here's hoping it is something other than ALS! Cindy
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
Thanks Everyone

We are praying it isn't ALS, it is just so frustrating not knowing, I think that is the worst part. He is still working, it is just a matter of time til his employers consider him a liability, but he insists he will work till that time comes, his fellow employees help him alot. He came home tonight, gasping for air, says his breathing is getting worse, he had to go to the ER the other day due to O2 sats being around 70% at rest. I am so scared. I know he has to be very frightened, he is the type person who never sits down, is always doing something, he hasn't been able to hunt or fish this spring and summer and he is an avid outdoorsman. I guess I just feel sort of useless, not being able to help him. I don't know what we are going to do when he can no longer work. I think that is his main concern right now. I told him as long as we can pay the house payment and the light bill and have gas to get him back and forth to his appointments that is all that matters, I pray we find out it is something else. Thanks for the support, it is very nice to know there is someone else out there
 

brooksea

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Joined
Sep 27, 2006
Messages
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Country
HM
Shelly I will be praying for you and your husband. Please let us know how y'all are doing!

When is his appointment?
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
Appointment

his appointment is September 16, is it normal to lose the bulk of muscle in the upper arms, Ed had very large upper arms, due to his working with 100lb bags of product in his job, now they are just gone, and he can't hold his arms out in front of him by himself, has to have help washing his face, fastening his pants, there isn't one single thing he can do for himself in his morning routine. This can't be normal
 

clint31

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Joined
Jun 13, 2008
Messages
30
Reason
Learn about ALS
Country
US
State
Ohio
City
Columbus
Hoping for good news for a fellow buckeye.

I had all those same symptoms.

I'd go back to your PCP and have him tested for Lyme disease. Like I said, I had those exact symptoms months ago....
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
Thanks for the comment about Lyme, unfortunately he has been tested 3 times. negative each and everytime, I would love to hear a diagnosed of lyme disease, but..........we can always get tested again thanks
 
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