Status
Not open for further replies.

GWB

Member
Joined
Feb 8, 2007
Messages
18
Reason
PALS
Country
US
State
OK
City
Sulphur
Hi Everyone,

I've been experiencing some symptoms that lead me to wonder if I have the onset of ALS. It has been coming on and off for about almost two years now, but during the past few months the symptoms have been more frequent and in some cases more intense. Here is a list of some of the symptoms I have been experiencing.

- Weak legs

- Weakness in hands

- Muscle twitching in various parts of the body, sometimes minor other times intense.

- Neck cramps that come and go. Haven't had them in a few weeks but it happened again today and it's been the worst cramps and pain I've experienced so far. I get them on both sides of my lower neck. The cramps are really intense and painful when they come on and sometimes it feels like it's in my throat too.

- Biting my tongue and lips

- I get exausted quite easily

- When I walk often times I feel like I'm going to fall down. The best way I can describe it is I feel as if I'm slipping on ice or something like that. I'm not talking about getting dizzy (although on occasion I do get dizzy), I mean I just feel like my legs are going to slip out from underneath me. This is happening much more frequently now and probably concerns me the most because I don't want to fall down.

This is a list of some of the symptoms I can think of at the moment. I'm a 53 year old male.

My dad died of ALS 25 years ago. I've never considered the possibility that I would get ALS simply because he did, no more than thinking I would get cancer just because my mom died from it. But after listing my symtoms on google and doing some checking around I have discovered that all of the symptoms I am experiencing are symptons that people with ALS experience. I know that doesn't mean I have it, and quite frankly I'm not worried if I do, but I thought I would post here and see if you all had some advice for me based on what I've shared so far. Anything you care to share with me would be greatly appreciated.

Thanks!
Gary
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi Gary,

Welcome to the forum, but sorry you had to come looking for us. You should see a neurologist. You could have a form of ALS called familial. This is a hereditary form caused by a defective gene called SOD1. I am not that familiar with familial ALS, but if you are diagnosed with it (and let's hope you are not), I am sure there are others on this forum who know a lot more.

Mike
 

GWB

Member
Joined
Feb 8, 2007
Messages
18
Reason
PALS
Country
US
State
OK
City
Sulphur
Mike,

Thanks for your reply to my post. I appreciate your comments. I agree I am going to have to go get tested because the symptoms have been more frquent lately.

You have an excellent website. It was encouraging to read it and see how you have dealt with ALS. It's amazing how you have been able to keep a positive attitude through it all. Thanks for sharing your experiences and giving others hope.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Gary. Welcome to the forum. I agree with Mike. You should see a Neurologist and preferably one that specializes in ALS and other Motor Neuron Diseases. There are a lot of different Neuro's around but only a few see a lot of ALS patients and you want an assessment by one of them. Don't forget to mention your dad as they may want to test you for the SOD1 gene. Do you mind if we ask whether you are in the States or Canada or somewhere else? AL.
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Thanks Gary. That's the idea.:-D

Mike
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
hi gary

:confused: hi gary,

you have come to the right place for encouragement and caring people, but everyong that has answered you has given you the right advice - you must see a neurologist, and gary, don't be surprised if he tells you ' i just don't know', bec. my husband went to several specialists besides neurologists;ie, respitory, ent, primary care, four neurologists before he was officially diagnosed with als.

but i can tell you this: the symptoms you have are identical to how his als began.

please see a neurologist soon, and please come back and share with us the diagnosed.

jackiemax
 

GWB

Member
Joined
Feb 8, 2007
Messages
18
Reason
PALS
Country
US
State
OK
City
Sulphur
Al said:
Hi Gary. Welcome to the forum. I agree with Mike. You should see a Neurologist and preferably one that specializes in ALS and other Motor Neuron Diseases. There are a lot of different Neuro's around but only a few see a lot of ALS patients and you want an assessment by one of them. Don't forget to mention your dad as they may want to test you for the SOD1 gene. Do you mind if we ask whether you are in the States or Canada or somewhere else? AL.

Thanks for your advice. You mean there is a test that will be able to tell if I definitely have the SOD1 gene? How accurate is this, do you know? Yeah, I plan to make an appointment with a neurologist next week. I live in OK and have found a clinic that apparently specializes in ALS. Although, I've been advised to go to a well known clinic in Houston or San Antonio where they have some of the top doctors, I think I'll start here and see where it leads. Again, thanks for your advice!
 

GWB

Member
Joined
Feb 8, 2007
Messages
18
Reason
PALS
Country
US
State
OK
City
Sulphur
JACKIEMAX said:
:confused: hi gary,

you have come to the right place for encouragement and caring people, but everyong that has answered you has given you the right advice - you must see a neurologist, and gary, don't be surprised if he tells you ' i just don't know', bec. my husband went to several specialists besides neurologists;ie, respitory, ent, primary care, four neurologists before he was officially diagnosed with als.

but i can tell you this: the symptoms you have are identical to how his als began.

please see a neurologist soon, and please come back and share with us the diagnosed.

jackiemax

Thank you jackiemax for your response to my post.

You mentioned that your husband went to several specialists before he was officially diagnosed with ALS. How did they finally determine that he indeed did have ALS?

I wonder, did your husband's symptoms ever subside only to reappear again later on?

One last question, for the past three years I have had pneumonia off and on and have had to have it treated several times with antibiotics. I just can't seem to totally get rid of it. Is this a common thing with ALS patients? I went to a pulmonary doctor yesterday to be examined. They gave me some blood tests and some breathing tests to see if he can figure out why I can't get totally healed of pneumonia. I'm beginning to wonder now if there is a connection to ALS?

Thanks again for your advice. I pray that God give you strength to care for your husband.
 

GWB

Member
Joined
Feb 8, 2007
Messages
18
Reason
PALS
Country
US
State
OK
City
Sulphur
Question

I asked jackiemax this question and I wanted to ask all of you as well:

For the past three years I have had pneumonia off and on and have had to have it treated several times with antibiotics. I just can't seem to totally get rid of it. Is this a common thing with ALS patients? I went to a pulmonary doctor yesterday to be examined. They gave me some blood tests and some breathing tests to see if he can figure out why I can't get totally healed of pneumonia. I'm beginning to wonder now if there is a connection to ALS?

Thanks to all of you who responded to my original post.
 

Howdy

Active member
Joined
Jun 22, 2006
Messages
65
Reason
PALS
Country
US
State
In
City
Bloomfield
Pneumonia

GWB, Pneumonia can be caused by several things. Bacterial is the most common, which can be caused be several types of bacteria. Then there is Viral pneumonia which can be caused by the flu virus. Then there is chemical pneumonia which can be caused by several chemicals. Mold can also cause pneumonia. There may be other causes also, but these are the one I know about. Hope this will help you. Howdy
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Gary. It is my understanding that the test for SOD1 is perfected. It only tells if you have the gene that may predispose you to familial ALS. It won't tell you that you have it or will get it for sure.
As for pneumonia I think once you get it, it is easier to get it again. My granddaughter had it last June in the Philippines and had it again in Dec. here. Every time my wife gets a cold she ends up with bronchitis and pleurisy. Maybe the germ doesn't leave your body completely.
AL.
 

GWB

Member
Joined
Feb 8, 2007
Messages
18
Reason
PALS
Country
US
State
OK
City
Sulphur
Al said:
Hi Gary. It is my understanding that the test for SOD1 is perfected. It only tells if you have the gene that may predispose you to familial ALS. It won't tell you that you have it or will get it for sure.
As for pneumonia I think once you get it, it is easier to get it again. My granddaughter had it last June in the Philippines and had it again in Dec. here. Every time my wife gets a cold she ends up with bronchitis and pleurisy. Maybe the germ doesn't leave your body completely.
AL.

That's good to know that the SOD1 test is perfected. I had no idea that there was even a test for it, never considered it.

Thanks for the information about pneumonia. I am waiting for the test results to see what the doctor wants to do next. So far none of the antibiotic treatments have been successful in getting rid of it. After I hear back from the doctor I will contact an ALS specialist and see if they will test me for the SOD1 gene.

Thanks for your input AL, I appreciate it!
 

GWB

Member
Joined
Feb 8, 2007
Messages
18
Reason
PALS
Country
US
State
OK
City
Sulphur
Howdy said:
GWB, Pneumonia can be caused by several things. Bacterial is the most common, which can be caused be several types of bacteria. Then there is Viral pneumonia which can be caused by the flu virus. Then there is chemical pneumonia which can be caused by several chemicals. Mold can also cause pneumonia. There may be other causes also, but these are the one I know about. Hope this will help you. Howdy


Thanks for the helpful information Howdy. I've learned a lot here since I joined a few days ago. I should have the results of my tests this week to see what the doctor wants to do next for my pneumonia. I've had it for three years now, so hopefully he will get to the bottom of this sooon!
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
some info to gary

gary - i just now found these posts, and will try and ans. them as best and accurately as i possibly can. you asked if my husband's symptoms ever left and came back. his first symptom was in jan. 06 - extreme fatigue. after that came the others - walking awkwardly, not being able to button his shirt or turn a key in the car, having to hold his fork another way in order to eat, and then came the respiratory problems. he noticed shortness of breath, and a resp. spec. put him on oxygen after giving him a breathing test. he is only on oxygen at this time at night, but we can foresee him having to start using his inhalor more and more during the daytime.

you asked how he was finally diagnosed. he had already researched als for months before they would officially diagnosed it, so he was already sure he had it from his on own research and symptoms, but he persisted, and after two emg tests, one showing that every nerve and muscle in his body that was tested showed to be damaged, so we finally went to an als specialist at the vanderbilt hospital als clinic in nashville, tn and they finally diagnosed it.

as for the pneumonia - he has never had pneumonia in his life, but the als caused so many breathing problems for him that his left lung is mostly collapsed, and the emergency room dr. put him on antibiotics to 'ward off pneumonia'. in my estimation, there most likely is some relation beteween the two things. by the way, the emergeny room dr. did not inflate the lung; just gave him antibiotics and 'sent him home' after a few hours. this news has amazed everyone we know, but we don't know what to do about it.

hope this has helped.

jackie
 
Status
Not open for further replies.
Top