Advice, joint cracking a symptom of ALS?

[adamico88]

Hi Toto,

Thanks for responding, I completely agree with you, I think something is going on with my ANA level. I looked up CNS and ANA but that seems to refer to lupus, which apparently I tested negative for. The rheumatologist ran the most recent blood tests & MRI...I really want to scream because my doctor said "you're ANA came back positive, but the specific test for lupus came back negative, so perhaps it was a false positive" ...but couldn't PERHAPS be a different autoimmune disease, i'm not a doctor, but I'm fully aware that lupus is not the only autoimmune disease. I'm not sure why I didn't speak up when she was reading my results, I guess I couldn't think fast enough, and I want to believe she knows what she's talking about....but i'm not so sure anymore

and now that you mention my GP, I saw her for anxiety a few days ago (because of course mine is through the roof at the moment, but all she perscribed was .5 mg of lexapro to take as needed...which has done nothing, so i stopped taking it)...but while I was there, she was talking to herself almost as she was looking through my labs, and I specifically remember her saying "well you tested borderline"...trailed off...then said, "that's why I sent you to the a rheum."...the makes me think she had to be thinking borderline ANA levels...which makes me think there definitely has to be something there....i'm requesting copies of those labs today to pick up.

I feel my rheum & GP haven't been taking me very seriously because I can't display the severity of my symptoms in their office. The snapping cracking happens usually when I'm still then go to make movements and pressure is applied to the joint. In there office, I'm just sitting on their exam table, and they have really just lifted my arms & legs...that's about it...it's so frustrating.

I am scheduled for a follow up with the rheum next monday...however, I kept my appt with the neuromuscular doc for tomorrow, and I've requested a copy of my MRI disc, and copies of all the blood tests by my rheumatologist & the two sets from my GP to take with me. He has a really good reputation in our area, so I'm hoping he'll take me more seriously & get to the bottom of this. I'm also hoping he'll give me a more physical exam, and have me perform some tasks, so he can actually her the cracking/snapping.

I know I've asked before, but do you think there would be more weakness if this were ALS? Or is it possible for everything to be affected, with no loss of movement yet....I do feel weaker, but have not lost range of motion in any of my extremities. I haven't noticed any muscle atrophy, but then again maybe I wouldn't notice it until it was extremely noticable? I never was the type to examine my body before either, so I'm not sure if there has been slight changes....sorry for rambling...my mind is just going a mile a minute these days. I'm also becoming concerned with MS (my cousin was diagnosed with it a few months ago)...I guess we'll see tomorrow.

I will get in touch with notme also, thanks for the tips! I really can't explain how greatful I am for your concern/suggestions/advice, it's really helping me feel not so lost . I'll update tomorrow after the neuro appt.

 

[adamico88]

i know i said i wouldn't update until tom...but i just picked up my blood test results from my GP...and my ANA level did test POSITIVE there too...what are the chances two different labs would have had a false positive testing? ...i'm thinking not too great. I can't believe they failed to tell me this was the reason they sent me to the rheumatologist...AND i can't believe they totally over looked this. hopefully i'm getting to some answer though.

 

[Toto's Dorothy]

88,

I want you to meet my best friend: THE NOTEBOOK (and not the movie). I learned when my youngest was born gravely ill, that the notebook would be our lifeline. I would sign every hippa form out there and get every test result, hospital notes, surgeons notes, et cetera. They were placed in the 3 ring binder. Then when I took her to whatever doc tor, I was able to lend them my copies for them to xerox. Less confusion and the doc tor didn't have to wait for the notes. I truly believed this is part of the reason she is alive today.

 

[Toto's Dorothy]

I swear any other time I. Have to push the stylus hard and just because I wasn't done it took it.

Now you have learned your lesson. Sign those hippas and get those copies and keep a notebook. I remember 1 time the 1 doc tor wanted a blood test done and I remembered having it done by gp a week before. I'm glad I remembered it wasn't a cheap test.

Good luck tomorrow,

 

[notme]

Hi Dorothy

What I mentioned somewhere is that cracking joints is the only thing that I'm not worried about and if it's not a symptom of ALS AND she's hypermobile, she shouldn't be either.

What's on my mind is intermittent cramps in both hands and feet, the numb spot on my cheek, the pills getting stuck in my throat/food slowly making its way down sensation (GERD GERD GERD), the fear that comes with a wet bottle slipping from my hand or failing to pick up something the first time, and that little voice in the back of my head worrying that the fasciculations everywhere might progress one day soon to clinical weakness.

I soooooo much want to believe you (and everybody, truly!) but the anxiety that I used to have seems to keep sneaking back in with every dodgy thing. If cracking joints and a bum hip were the only things I had (as they were 6 months ago!), I'd be a happy camper. Counting down the days until I can get a full medical check-up and every test that might be necessary to get peace of mind or a diagnosis that can be actioned. Limbo is a bad place.

GERD isn't from ALS. Fasciculations don't PROGRESS from weakness--they are caused by the muscle death--so there is ALREADY weakness before they begin--along with atrophy.

A numb cheek isn't from ALS. "feeling" l.like pills are stuck isn't ALS. Cramps in hands and feet once in a while is normal--for everyone.

Honestly, there's nothing in what you posted above that even sounds remotely like what one with ALS experiences. We all drop things once in a while.

Worry when you can't LIFT the bottle at all. Or when you can't button a shirt, or push a door lock,, or walk without your foot catching and making you fall repeatedly.

I don't think you need to worry about ALS unless there are some symptoms you didn't list here. Good luck to you.

 

[adamico88]

sorry acutally in reference to my last post...I'm confused about the ANA level...are 1:32 and 1:16 actually on the higher end?

 

[fitzroy]

I'm sure you've already read everything there is to read on a Lupus site somewhere. But without clinical correlation your ANA levels are inconsequential. One thing I will say, if you were truly ill with an auto-immune condition there would be little doubt about the presenting symptoms. If your doctors aren't worry, neither should you be.

 

[adamico88]

notme & Fitzroy-

thanks for responding. I guess I was just worried something nero-muscular was going on because the GP & Rheumy haven't given me any clear answers so far...but, I did see the neromuscular doc today, and he was fantastic. He does not think it's neuro-muscular related, my reflexes/muscles strengths is still strong & even on both sides of my body.... however he also does not think it is hypermobility. He was actually totally confused as to why the Rheumy would have suggested that. He said I do not exhibit any hypermobile qualities. He looked at my all blood test results and said my ANA level is raised, and it is certainly worth further testing, especailly with all my symptoms (he was the first to hear the extent of my cracking, I was so relieved! since he had me try to do a bunch of physical tests--said not normal, he could hear how much I'm snap/crackle/popping).

I think he could tell I wasn't completely happy with my Rheumy (and again, he was also confused as to why she brushed my symptoms off as to being hypermobile)...so, he suggested I follow up with her one more time(he was going to send her copies of what he observed/thought about my symptoms), but if I'm not satisfied, or she doesn't do further testing, to switch to a different Rheumatologist. He also said it wouldn't be out of the question to find a Rheumy at a university, since they see people with the stranger symptoms (I guess that means mine are on the stranger side). All in all, I'm a little relieved, my symptoms are definitely pointing to something more autoimmune related. I have an appt Monday, so we'll see what the rheumy suggests then.