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billymcg

New member
Joined
Apr 6, 2007
Messages
2
Reason
PALS
State
DE
City
Hockessin
Hello,

First I would like to thank this web site I really have know one to talk to about my possible ALS, I do not want to put any more burden on my wife, in case I have ALS so much will fall upon her I am 46 with three kids age 18, 15 & 10. I guess I am just scared & worried about what the future holds for my family, they are the ones who will sacrifice and suffer. So I find some solace in these forums they have been a god send thanks.

Just to give yo some background, for a couple of years ago I had a dropped foot and weakness in my right leg and an occasionally twitch in my leg and hands. I went to a Neuro. who preformed an EMG which came back abnormal. which was blamed on my type II diabetes. My leg continued to get weak and lose muscle mass, my kids referred to my right leg as my "dead leg" However I never went back to the Neuro. Around Christmas of 06 my 15 year old daughter was referred to a Neuro (thank god she is fine)
However, the Dr. asked if anyone in the family has been to a Neuro. before. My daughter told the Dr. that I have. Since it was the same practice that I went to the Dr. looked at my records, and made ny daughter promise that I would make an appointment with my Dr. I am sorry for rambling, I will try to keep this shorter. Since Feb. I have had 2 EMG both came back abnormal in all form limbs, from about May of 06 I have noticed weakness in both legs and arms. I have constant twitching in my right leg and both arms, with definite atrophy in my arms. I had an MRI which was fine no tumors or bad disc. My spina showed proteins but with diabetes that was expected. My blood work showed slight elevated in a protein which is an indicator of muscle decay. I had a swallow test which was normal. My pulmonary test came back some what abnormal, and they are looking at a possible By-PAP MACHINE (YIKES) The two Dr told me I have a MND but not yet DX of ALS, although the put me on the R medicine.

So, finally my question ( i doubt anyone is still reading this diatribe) they have referred my to the ALS Center at the University of Penn. I was wondering what to expect, and will I get a DX or will this drag out more. Again, thanks for everyone on this site.

Thanks,

Billy
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I was referred to the drexal university in penn by John Hopkins .Its the ALS clinic They are wonderful They will give you answer bring all your emgs and records.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Billy. First thing they will probably do is a complete history of your symptoms followed by a full physical exam and then a new EMG and NCV test. Depending on the results of all this they may be able to give you a diagnosis. It really boils down to how bad your symptoms and tests are on the day you are tested. They will rule out everything else before giving you a definite answer and even then it may take longer to learn something definite. Some of the people here wait for a long time just because their tests and symptoms don't fall into the typical group. Hopefully they will rule out ALS.
AL.
 

DavidGL

Active member
Joined
Aug 18, 2006
Messages
41
Reason
Learn about ALS
Country
US
State
PA
City
Huntingdon Valley
patricia sciarrino said:
I was referred to the drexal university in penn by John Hopkins .Its the ALS clinic They are wonderful They will give you answer bring all your emgs and records.

I go to Drexel/Hahnemann too. Do you see Dr Heiman-Patterson there? I am very pleased with the way they run things.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
yes I see dr patterson and I am pleased as well I have a appt in July maybe Ill see you there>Pat
 
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