Advice, joint cracking a symptom of ALS?

[adamico88]

Hello all....I'm hoping to get some advice of whether I should stop worrying, or start pushing my doctors more. For the last six months I have had extremely strange joint problems start out of the blue. It started in my neck (a crunching sound every time i turn it), then moved to my shoulders, hips, knees, back, ankles, wrists, even the bones in my toes now (but they're more of a snapping sound)! Every time I move there is extreme cracking/snapping noises. I noticed in my wrists my muscles have also started to slide over my bone in a strange way...and NOT NORMAL cracking, at least 20-30 times a minute, and very loud...to the point that my co-workers have started to make comments. I have also started to feel a weakness in my shoulders, like I can't lift things...

My neck/shoulder x-rays came back normal (but of course that wouldn't show a problem with my muscles)...All of my blood work has come back normal (lymes, lupus, arthritis, inflammation, etc etc) and believe me, they've tested for everything imaginable...I have seen my primary care doctor 3 times and a rheumatologist, but they're having a hard time getting me approved for an MRI because there's no pain/tingling/numbness...and apparently my age (I'm only 23). It seems ridiculous to me that it's that difficult to have my insurance approve me, but who knows.

The rheumatologist also kind of blew me off, saying "she's not sure what the cause could be, but we'll check back in 8 weeks,"?!?! which completely frustrates me because 8 weeks is a long time to worry, especially when it seems to just be getting worse & I've already been waiting 6-7 months!....I took the matter into my own hands after that & scheduled to see a neurologist next week without being referred (hopefully he'll be able to push more for the MRI or an EMG maybe?)....but in the mean time, I'm wondering if anyone could tell me if this sounds like the start of ALS? I know joint snapping/crackling/popping isn't normally associated with it, and it's not common for someone my age (23)/gender (f)... but any advice would be greatly appreciated....and will probably save my sanity.

 

[Toto's Dorothy]

88,

I'm sorry, my symp toms were nothing like yours. And I have never heard anyone mention the cracking and popping noises either. I hope you get to the bottom of what is ailing you.

Good luck,

 

[adamico88]

Toto,

Thank you for the response, that really helped me feel a little more relaxed. I've only come across a few people who have described cracking as a symptoms once they were diagnosed with ALS, but that was enough to make me worry. Hopefully my doctor will come across something they have missed.. the waiting is just the hardest part, as I'm sure you are well aware of.

Thanks again, and best of luck to you as well,
adamico

 

[TedH5]

I have never read of cracking in your joints as a sign of ALS. I believe that you need to stop worrying. You made one statement I agree with "8 weeks is a long time to worry", but that is because your Dr is not worried. Let me explain how it works, when my Dr did not know what was wrong and sent me to a neuro surgeon the neuro surgeon said something is wrong I want to do spine and brain MRI's tomorrow and see you back here the next day. My point is when Dr's believe something is wrong they do not wait for 8 weeks for a follow up.

You need to put ALS out of your mind and allow your Dr's to do their job.

Good luck to you.

 

[adamico88]

Thanks ted, I know you're probably right. I should stop worrying till I have something more concrete to worry about. I guess I just panicked a little because the doctor did say she didn't think it was my bones from the x-rays, it's probably more to do with my muscles...but, today I did get approved for the MRI, so hopefully that will give us a little more info to work off of. Thanks again for your time & advice.

Good luck to you as well.

 

[vzandt]

My husband doesnt have any noise from his joints....unless he falls on them. Good luck.

 

[trfogey]

I have never read of cracking in your joints as a sign of ALS.

Go back and look at the early months of the DIHALS forum archives. It was quite a popular symptom among the twitching folk back then and seems never to have gone out of style. I find mention of it to be a good indicator that the person citing it has done a lot of reading in those old posts.

 

[adamico88]

Thanks vzandt...I'm trying to stop worrying :/ bc the majority of people don't have this symptom.

Al..I actually hadn't read the posts you are referring to by lou (at least I think that's what you're referring to, I'm not very good at navigating the site yet)...but I came across a few others while looking for earlier posts that mention joint cracking. I noticed most of them were not diagnosed though...so that's a good sign? is that what you're saying? or were you just saying you think I'm jumping to conclusions from the posts I've read...

I don't mean to be a bother, I was just wondering if anyone had come across this as a symptom with ALS since my doctors are bewildered so far.

 

[Toto's Dorothy]

88,
Exactly what did you go og le to land here at this forum? Just curious.

 

[adamico88]

toto,

Yes, I actually was told by the rhuem. it could possibly be hypermobility syndrome (since she really didn't think it's arthritis), but she "wasn't sure." They couldn't tell if it is anything else without an MRI, and were having a hard time getting my insurance to cover an MRI... but luckily they did, and I'm scheduled for one tomorrow....but while I googled what the symptoms of hypermobility syndrome were, blogs from people who had ALS with joint cracking symptoms came up too...those blogs linked to here. I suppose I panicked because I thought maybe loss of muscle around the joint could be causing the cracking noises (or a few people mentioned it's not the joints cracking, but the muscles/tendons snapping over each other due to the loss of muscle). I would hope if that's the case though, I'd be feeling a lot more weakness by now?..l. I've been trying to stay calm & not think about it, but it's hard when every movement is a constant reminder.

 

[trfogey]

Al..I actually hadn't read the posts you are referring to by lou (at least I think that's what you're referring to, I'm not very good at navigating the site yet)...but I came across a few others while looking for earlier posts that mention joint cracking. I noticed most of them were not diagnosed though...so that's a good sign? is that what you're saying? or were you just saying you think I'm jumping to conclusions from the posts I've read...

Both, actually. Yes, all the ones that I tracked were never diagnosed. And I do think you are jumping to conclusions about having ALS because of those old unresolved cases.

 

[LizT]

My knees crack every time i squat
my shoulders crack every time i move my arms
my knuckles crack when i make a fist
my ankles crack when i walk
i have atrophy in my knees
I have weakness in my knees.
I DO NOT HAVE ALS.
Try not to jump to conclusions.

 

[Toto's Dorothy]

88,
Funny you mentioned hypermobile joints. We have another person here that has this diagnosis and is questioning ALS. If you could look through some of the most recent posts and find her/him (I can't remember which), you might be able to share notes. I don't oo gle things, that's what I pay doc tors for, but it was interesting. I have a daughter who just turned 19 and has a tentative diagnosis for RA. Until now, I hadn't looked up anything. I'm definitely not one of those do as I say not as I do people.

Liz, you're cracking me up!

 

[Toto's Dorothy]

Oops sorry, 88. Look up Co nnec tive tis sue dis order or dis ease.

 

[notgivnup]

Liz, have you tried some WD40? ......:shock: