Status
Not open for further replies.

fmarino

Active member
Joined
Mar 9, 2008
Messages
42
Reason
PALS
Country
US
State
nj
City
new brunswick
Hello everyone

I have had these symptoms long enough and now I need to share them. I have my fears that I have something really bad.

I am a 40 year old male. This all started about 3 months ago. I had unexplained MILD weakness in my arm (shoulder, bicep, forearm). A month later I developed some weird sensation in that arm (kind of tight, burning . . . hard to explain) when I used it too much and it got weaker when it felt that way (that lasted a few days). That sensation more or less went away for about a month and then it came back again a month later, but this time it went all the way into my hand. This time my entire arm felt weaker (even hard to move my fingers). When the sensation went away (it again lasted a few days), I had better use of my arm and hands. My arm now aches but that comes and goes depending on how I'm sitting. The ache will move from muscle to muscle depending on how I'm sitting or standing. When the discomfort is there, my arm feels weaker. I have read threads on here about pain and ALS and most claim that pain isn't associated with ALS (especially very early in the disease), but others have said that it is. For those who have had pain, what kind of pain is it? Does it burn and feel like someone is squeezing your arm? Does your pain "go away" and then come back. One other thing: I've lost muscle in my arm: in my shoulder, my upper arm (mainly tricep) and forearm. My hand seems to be ok.
Well now 3 months later, my other arm is having similar, but much, much milder symptoms. It feels like it's getting weaker. When all of this started, that arm had a strange tingly feeling in my shoulder and then felt weaker shortly after that. That went away in a couple of days. Now the arm is getting a little weaker.
I also have a strange feeling in my leg (this started about month after my first symptom in my arm). I'm not sure if it's weakness or something else. It also travels: sometimes I feel it in my feet and calf and sometimes I feel it in my upper leg and sometimes I feel it in my gluteal muscle and sometimes I feel it in my entire leg. It travels around a lot and sometimes I feel it in both legs, but when I do, I feel it in my calves and feet. Some days it's completely gone, but most of the time it's present. Again, I'm not sure if it's weakness. It's a very weird feeling. What does weakness feel like in your legs?
I've read enough about ALS and I've been on here long enough to realize that my symptoms aren't typical. BUT, what concerns me is that this all started without pain AND I've read how some people have had pain with ALS.
I respectfully ask you all for some advice. Getting more nervous as the hours go on.
Frank
 

fmarino

Active member
Joined
Mar 9, 2008
Messages
42
Reason
PALS
Country
US
State
nj
City
new brunswick
One more thing

I can't believe I forgot to add this to my thread: I have fasics in both feet, calves, legs and sometimes in my chest. Don't really feel them in my arms, but I do from time to time. I also feel a tingling sensation in my lips (this just started). Can you get fasics in your lips. Is that tingly feeling actually fasics from really small muscles?
Thanks again for reading my thread.

Frank
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Frank. We are none of us doctors here but even if we were your symptoms could be due to many things - most of them treatable. Some folks here will urge you to get a complete work-up by a world-renowned neurological clinic but it can take time to get an appointment. Your local neurologists can find most of the more common causes for pain and tingling. Be prepared to hear that a lot of folks have fasciculations and it is often benign.

One ALS doc told a member just this week that of all the folks he tests, only 10% have MND, so it is definitely not time to worry! Hope this helps.

BTW, I’ve had all your symptoms and many others for going on 2 years now and the most they can say is that it is “something neuromuscular.” Not to discourage you but it can take time, to say the least. And I am still working, driving, and living a full life!:-D
 

fmarino

Active member
Joined
Mar 9, 2008
Messages
42
Reason
PALS
Country
US
State
nj
City
new brunswick
Thank you Cindy

Thank you Cindy

So you started with symptoms in your upper arm like me and you've had burning, wrenching pain too? Would you have time to share your symptoms. I looked up your other posts and I didn't see them. I know you said there aren't any doctors on here, but from what I understand, you're a moderator on here. Do my symptoms sound like ALS to you or anything else you might be familiar with?
Anyone else with some advice would be greatly appreciated.

Thanks again, Frank.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Frank. Being a moderator does not mean I have special knowledge. I was asked to volunteer because I became friendly with AL, who really does know about ALS, and David, who owns the board. David donates his time and the costs for putting up this site and Al, I suspect, volunteers because he wants to share his wisdom. I donate my time because ever since I had this personal health scare I have great respect for those who live with the disease every day.

Like a lot of people on here, I have been told that the burning in my hands comes from carpal tunnel, a pinched nerve in my neck, a pinched nerve in my elbow, and arthritis in my back. It seems that I do have all of these conditions, and now I am losing muscles in my legs, feet, hands and arms. I tell you this so you will know that, had I decided to worry about the pain in my hands (BTW, in my case it comes from asking the muscles that are left to do the work of the ones that died,) had I worried about this then or now, all I would have gotten was a few more grey hairs and probably an ulcer.:-D

It is important to get checked out because, for example, if the tingling in your lips is caused by something environmental, you need to know that so you fix it. But second-guessing what might be wrong will only get you grey hairs or an ulcer. :-D
 

fmarino

Active member
Joined
Mar 9, 2008
Messages
42
Reason
PALS
Country
US
State
nj
City
new brunswick
To Cindy

Thank you once again, Cindy. Sorry to hear that you're losing your muscles and strength. So you didn't have pain until you lost muscle? They have no idea why it's happening? That seems odd to me. Is it still progressing? Would lithium help?

Take care of yourself and I'll try to take your advice and calm down. This site is a God-send . . . along with the people on it.

P.S. Do you think Al would have any insight into my symptoms?
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I am sure some of our long-term PALS will check in soon. AL is at a family wedding that got a ton of snow dropped on it. Last I heard from him, he said, "Wish you were here-with a shovel!"

That's our guy! Always quick with the wit!
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Hi Frank!

You know some times you read a thread and you just say to your self, wow, that does not sound good. I am no doctor either and yeah you got your self something going on, but what I am reading I does not sound the real "BAD".
There are lots of things that can cause your symptoms, get it checked out, and hopefully it is as simple as say vitamin B12 deficiency.

I understand the worry, that is the big concern right now.
 

FootballNick

New member
Joined
Dec 17, 2007
Messages
9
Country
US
State
NJ
City
Morris
Hi Frank.

Sorry that you're here and hopefully everything will work out well for you.

While not exact, your symptoms sound similar to mine. Without being an expert, the best I can do is to agree with Cindy and for you to seek professional advice from a Doctor / Neuro. If your symptoms persist also note that it may certainly be frustrating for you as Neuro-Muscular problems seem to be extremely difficult to Dx. Hang in there!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Frank. My guess (not being a doctor) would be a pinched nerve or something of that nature. Certainly worrisome but not something to really stress yourself about. Try to relax and I'd see your GP to eliminate the obvious and see a good Neuro if he doesn't come up with something. Taking certain blood pressure meds could cause some of your symptoms. My weakness felt like a tiredness. I'd have to rest halfway up a long staircase and pull on the railing with my arms because my legs just wouldn't lift me. Once weakness starts it doesn't go away and come back again generally. When I got pain it was from a cramp or muscle spasm. It wasn't like a stomach ache or headache like pain. Never got any burning either. 3 months is pretty quick to get all the limbs involved too. I don't think you have ALS. My opinion only. That and $1.50 gets you a coffee at Dunkin Donuts.
ALl.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hey Al- welcome back! So they DO have dunkin donuts up there! When I visit Denver, there is not a decent donut shop in sight. And before all your folks from the Rockies write back and point out that you have Starbucks and such, let me say that my Son In Law, who comes form there, admits that you have not tastes a good donut until you go to dunkin's. But I am partial since they started out here in New England.
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
Eliminate the treatable, then worry

fmarino,

I just wanted to put in my two cents. My husband has a variant of ALS called Progressive Muscular Atrophy, and what concerned us most at the start of all of this was the absense of pain. Pain is a good thing. It means you probably have something treatable, at least hopefully. I would definitely take the advise of those before me on this thread. Get the work up. Eliminate every other possibility, then, God forbid, you can begin to worry about ALS.

Julie
 

fmarino

Active member
Joined
Mar 9, 2008
Messages
42
Reason
PALS
Country
US
State
nj
City
new brunswick
To Juliesmiles

Hello Julie

First of all, I want to give you my sympathies for the diagnosis of your husband. I have heard of lithium being given to ALS patients. Will that work for PMA too? I also understand that PMA progresses slower than ALS. Maybe with that slow progression and lithium, he will stay the way he is and just age naturally with you.

So you said that all of his symptoms started without pain. Does that mean he is in some kind of pain now? If so, is it muscle pain, bone pain or the kind of pain I have (burning and wrenching pain, which I understand to be neuropathic pain)? My journey started without pain for the first few weeks (I felt some weakness in my upper arm) and then the weird pains started. I definitely "feel" something wrong in my arm. And yes, I understand that ALS doesn't typically start with any type of pain, especially neuropathic pain, and the weakness that starts and continues is not "felt" either. Grampa Al also share that with me, not in so many words. I'm cautiously optimistic I have something treatable.

Please take care of yourself and your husband.
 
Status
Not open for further replies.
Top