Status
Not open for further replies.

Cinammo

New member
Joined
Oct 26, 2006
Messages
1
Reason
PALS
Country
US
State
WI
City
Manitowoc
My husband is 45 and whatever this thing is he has has not been diagnosed yet. Two months ago he started having burning of the feet which climbed up to the middle of his back. First we went to our normal doc and she did some testing and his ANA was positive and his sed rate was real high and so was the c-reactive protein. She reffered him out to a Rhuematologist. This doc did some more blood testing and ordered nerve conduction studies. Those were done on 9/26 and we just got the results yesterday. The Rhuematologist said he needs to see a neurologist as soon as possible and that will be the 30th. I asked him to explain what the studies said and he said he would rather have the neurologist explain it too us. I went and got a copy of the study yesterday and I did not understand it but it did not sound good so I gave a copy to our primary doc and she did not really know what it meant. So we have no idea what is going on and the reason I am on this board is because typing in some of the results of his test came up with a whole bunch of things including ALS. Can someone help me in decoding this medical jargon before I lose my sanity. My husband is on 1200mg Gabapentin and 225mg Lyrica because they initially stated it was peripheral Neuropathy but it seems to me it's something more now or maybe I am just plain scared. Here is what the nerve conduction study said:

"Electrodiagnostic evidence most consistent with demyelinating greater than axonal loss, motor greater than sensory peripheral poloneuropathy mostly effecting the bilateral peroneal and tibal motor nerves

Electrodiadnostic evidence cannot rule out bilateral L% and S1 Chronic Radiculopathy

No Electrodiagnostic evidence suggestive of any inflamatory myositis or myopathy in the muscles evaluated"


His symptoms also include lightning bolt type sensations in his arms(sometimes) and we had to take him to the ER recently because of chest tightness and a numb left arm. I'm scared because he is in so much pain but no one wants to or will tell us what is going on and I think that is what is bothering me most. Does this sound like ALS? or anything any of you know about. Please help me. Fear of the unknown is the greatest fear there is.

Thanks
Cindi
 

DavidGL

Active member
Joined
Aug 18, 2006
Messages
41
Reason
Learn about ALS
Country
US
State
PA
City
Huntingdon Valley
Cinammo said:
My husband is 45 and whatever this thing is he has has not been diagnosed yet. Two months ago he started having burning of the feet which climbed up to the middle of his back. First we went to our normal doc and she did some testing and his ANA was positive and his sed rate was real high and so was the c-reactive protein. She reffered him out to a Rhuematologist. This doc did some more blood testing and ordered nerve conduction studies. Those were done on 9/26 and we just got the results yesterday. The Rhuematologist said he needs to see a neurologist as soon as possible and that will be the 30th. Cindi

I can see why you are alarmed but I would suggest that you try and calm down. You are getting to the neurologist pretty quickly, although it sure took a long time to get your results from the rheumo. I wish I could get appointments that quickly! The neuro will be able to answer your questions.

Anyway, IMHO the symptoms you describe really don't sound like ALS at all. Sounds more like some kind of neuropathy. Maybe someone else will think otherwise...but, at this point, we'd be just speculating. Hang in there for the 30th.

DavidGL
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I'd hazard a guess that it sounds more like nerve problems than muscle at this point. Try to stay calm as David suggests. See what the Neurologist says. He's the expert. Let us know how you make out. AL.
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
Cinammo said:
My husband is 45 and whatever this thing is he has has not been diagnosed yet. Two months ago he started having burning of the feet which climbed up to the middle of his back. First we went to our normal doc and she did some testing and his ANA was positive and his sed rate was real high and so was the c-reactive protein. She reffered him out to a Rhuematologist. This doc did some more blood testing and ordered nerve conduction studies. Those were done on 9/26 and we just got the results yesterday. The Rhuematologist said he needs to see a neurologist as soon as possible and that will be the 30th. I asked him to explain what the studies said and he said he would rather have the neurologist explain it too us. I went and got a copy of the study yesterday and I did not understand it but it did not sound good so I gave a copy to our primary doc and she did not really know what it meant. So we have no idea what is going on and the reason I am on this board is because typing in some of the results of his test came up with a whole bunch of things including ALS. Can someone help me in decoding this medical jargon before I lose my sanity. My husband is on 1200mg Gabapentin and 225mg Lyrica because they initially stated it was peripheral Neuropathy but it seems to me it's something more now or maybe I am just plain scared. Here is what the nerve conduction study said:

"Electrodiagnostic evidence most consistent with demyelinating greater than axonal loss, motor greater than sensory peripheral poloneuropathy mostly effecting the bilateral peroneal and tibal motor nerves

Electrodiadnostic evidence cannot rule out bilateral L% and S1 Chronic Radiculopathy

No Electrodiagnostic evidence suggestive of any inflamatory myositis or myopathy in the muscles evaluated"


His symptoms also include lightning bolt type sensations in his arms(sometimes) and we had to take him to the ER recently because of chest tightness and a numb left arm. I'm scared because he is in so much pain but no one wants to or will tell us what is going on and I think that is what is bothering me most. Does this sound like ALS? or anything any of you know about. Please help me. Fear of the unknown is the greatest fear there is.

Thanks
Cindi
please let us know how your husband is . it will interesting to find out. janf
 
Status
Not open for further replies.
Top