Doctor concerned

[Johndoe]

First I'll start out by saying I lost an uncle a few years back to als and it hit him hard...I remember him working to passing away in less than a year..but don't ever remember him really telling me his symptoms. I'm a 22 year old male and have been having leg pain, cramps, twitching, and lightheaded feeling, this all started about 2 years ago in my legs and moved to my arms slowly after..the pain cramps and twitches never go away but will ease up and come back out of nowhere..so 2 years ago I went to doctor thinking it was a deficiency or something in my back since at that time it was only in my legs...well since the doctor knew about my uncle he performed a few strength tests and said I was ok gave me some pain meds and sent me on my way...well about 2 months ago it really started getting worse..pain in legs and arms twitching cramps and my legs and arms get shakey and my legs feel like they ate going to give out when walking far distances so I had to go to a new doctor and he checked me out and said he is really worried about it being als and is getting me into a neurologist asap...but what I don't get is I would think since it started 2 years ago I wouldn't be able to do things I can do now..yes im in alot of pain and my muscles feel like they are going to give out..but they don't. .doctor says he feels that I have weakness...I can still do push ups. .situps..yea it hurts like hell but I would think I wouldn't be able too..so here's my question guys..my insurance deductible is 3k...should I listen to doctor and go to neurologist...or should I find a different doctor that isn't worrying me about als?

 

[Nikki J]

Well this does not sound a lot like ALS, one relative only with ALS is not considered to increase you risk but if you have clinical weakness? You should go get checked. The chances are really very very high it is something else. Maybe the neuro can help. If you go to another gp even if they think you are ok they are probably going to tell you to see the neuro because once the question is raised they do not want to risk being sued so it is safer to refer. Do you have to pay the full office consult or is the deductible for xrays blood tests etc?

 

[Johndoe]

I only have to pay a small amount for the office visit..I think the neuro is wanting to do a em or a mri I honestly can't remember which...but your probably right even if it is my LF something is obviously going on so I should just quit being a tightwad and spend the money and get it doneone thing that I have noticed though is it's never just one arm or one leg it has always been in both and I have read a lot where people say that als will start in just one leg or arm and progress to another.

 

[Atsugi]

First, it doesn't sound like ALS: You hurt a lot. ALS doesn't hurt.
Second, you're concerned about finances: IF I thought I had a terminal disease, money would be the least of my concerns.

 

[Johndoe]

Yes you are right, I just worry about finances more than I should..you say their isn't alot of pain with als? What I'm experiencing is like a cramp/tight feeling along with the weakness..almost like a heavy feeling like I'm carrying another person on mh back.

 

[Nikki J]

That is not the way it starts. For some there is a lot of pain later. But your whole description is not like ALS. Please just go to the neurologist. If he/she recommends a lot of tests you can discuss the cost/ benefit then. Ask what they are looking for and how the test will help you. I suspect that a clinical exam by a competent neurologist might be enough to exclude ALS. But again supposedly the pcp found weakness? If so that is not normal and there are a zillion things that could cause it most of them fixable. Are you not going to spend money now to do that? From a purely financial point of view risking your health is foolish as being disabled negatively affects your income and is expensive too. There is an old English saying penny wise, pound foolish

 

[Atsugi]

Nikki is totally right in every word, Johndoe.

At the beginning of ALS, before you are totally disabled and wheelchair bound, there is not a lot of pain, cramps, or heavy feeling. In fact, you don't feel anything wrong at all--your muscles simply don't work, they don't contract.

You see, ALS destroys the nerves in your brain that signal your muscle to contract. It starts with a hand or a foot. So your hand or foot simply doesn't lift--it's limp. There's no pain, no fatigue, no cramp, no weak feeling--it just doesn't work.

Later on in the disease progression, as the patient is paralyzed and the muscles are wasting away and the patient has been motionless for some days or weeks, there is joint pain from not moving for so long. There is painful swelling. But at the beginning of the disease, when you're still walking and talking and carrying on the activities of daily life, there is not pain--only a muscle that is limp and useless.

That's why we're really sure you don't have ALS. You don't. Not at all. But if you're hurting and your PCP found some sort of weakness, you should definitely get it checked out and fix it. Good luck.

 

[skipper66]

Your symptoms don't sound like how my dad's started at all. Dad didn't have any pain. His muscles just quit working and he had alot of falls.

 

[Johndoe]

Thank you guys so much! I will let you know what the neurologist says..my pcp did start me on gabapentin bc he thinks I might have fibro bc of how much morning stiffness I have so we will see how that works.