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DebbieDWill

New member
Joined
Nov 13, 2016
Messages
3
Reason
CALS
Diagnosis
11/2016
Country
US
State
South Carolina
City
Clover
Last Thursday, my 60 yr old husband (husband of 6 weeks, I should add!) was told by a neurologist that he has ALS. His only symptom is weakness in one hand which came on suddenly in June 2016. At that time, his PCP ordered an MRI and he was promptly sent to a neurosurgeon who diagnosed him with severe degenerative spondylosis, central canal stenosis and cervical myelopathy and he had cervical fusion of his spine. During subsequent physical therapy, the PT suggested he get an EMG. He has since had MRI of spine and brain which were clear and an EMG which was abnormal. However, no other tests (blood, urine, etc) have been done and he has regained some very slight movement in his fingers as well as slight improvement in muscle atrophy. He has been referred to an ALS specialist and we are waiting for an appt. Do you think it is possible to get a true diagnosis of ALS based on the info I have stated? Ate we just in denial? You folks understand how devastated we are. Any thoughts or advise is appreciated. Thanks.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,174
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
In my opinion, only an ALS specialist can diagnose ALS, especially with limited testing. I wish I could say something to make you feel better so I'll try. "slight improvement" in movement and atrophy usually doesn't happen in ALS.

I DO understand how scared you both are. I'm praying it will be something else.

I hope you can get to the ALS specialist soon. I also hope the other doctors didn't diagnose him in their notes because you should increase life insurance and make other financial adjustments before getting a diagnosis, if possible.

I'm hoping and praying it is something else.
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
If it is true that there has been slight improvement in movement and less atrophy then that points away from ALS. You really need the neuromuscular specialist to help make that call. Hope your original diagnosis is wrong.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,063
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Felicitations on your marriage, Debbie, come what may.

Others have said it -- a second opinion is always recommended and all the more if the condition has improved. Where are you going? Remember, the squeaky wheel matters so follow up if you don't get prompt action. You may also want to read the 2nd opinion sticky.

Best,
Laurie
 

DebbieDWill

New member
Joined
Nov 13, 2016
Messages
3
Reason
CALS
Diagnosis
11/2016
Country
US
State
South Carolina
City
Clover
We have been accepted at Duke ALS Center but they say they cannot see us till April. I called back yesterday and explained we need a second opinion and could not wait that long. No response yet but I talked to the folks at Wake Baptist in Winston Salem and they were super and said they will call me back this week. In the meantime we are seeing our PCP in the am and will ask him to advocate for us at Duke. We will see which works out first!
 

Jocalyn8

Active member
Joined
Jun 26, 2016
Messages
86
Reason
PALS
Diagnosis
10/2015
Country
us
State
north carolina
City
Charlotte
The clinic at Charlotte is quite good. Dr Brooks is there. 704-446-1900. They got me in pretty fast.
Cheers
Jocalyn
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,426
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
So sorry to welcome you here.

Congratulations on your wedding. I agree with the suggestion of others that you get a second opinion. Glad to see you are working on that.

This is an amazing place full of very helpful and caring people who can really relate to what you are going through. We are here with you.

Steve
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,469
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Our neuro considers the "relapsing remitting" pattern of Brian's symptoms sometimes something to keep an eye on, and he has a Dx of ALS confirmed by two specialists. So if any improvement at all makes HIS diagnosis potentially suspect, I imagine that goes double for your husband.

Best wishes at your specialist appointment.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Debbie my husband had a query of ALS from his neurologist back in 2007. We went to a unit that specialized in neuromuscular disorders to get a second opinion. He had a slew of tests, and then was given a trial of IVIG to gauge his response. He had good response (he had lost most use of his right hand with atrophy of the thenar plane). He was given the diagnosis of CIDP -MADSAM (a variant with motor symptoms that do mimic ALS) and he has been on IVIG monthly since 2007. Good luck!!
 
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