Question on Creatinine levels in ALS

[lynnecline]

Can someone tell me if there is diagnostic significance to Creatinine levels in ALS? I don't want to waste anyone's time so I will give a very short version of my story:

I am 34, married, mother of 2, pregnant with 3rd. Have body wide twitches for 12 months, no weakness of atrophy, one visit to Neuro. Had clinical exam, everything fine. She offered EMG, but said she didn't think it necessary so I declined. I have horrible anxiety, and now that I am pregnant twitches are worse. I have mostly been able to not obesess too much, but the last couple of days I have been back on constant worrying about ALS because my twitches have increased (not suprisingly, since my anxiety has increased). Anyway, today I had to go to the ER for a pregnancy related issue, and they took blood. Lo and behold my creatinine level was low at 0.56. I made the mistake of googling, and realized that low creatinine level can be associated with muscle loss. So, I have completely been panicked. However, I can't tell from google 'research' if this level is even a consideration with ALS diagnosis, and if so if high or low is 'bad'. Can someone help answer that?

I want to thank you all for your time. I have been reading for the past year, but out of respect never wanted to post. However, my panic is at a level now that I am not sure what else to do.

 

[Nikki J]

Creatinine normally decreases during pregnancy. That looks like normal range for a pregnant woman. What did your doctor say?

 

[lynnecline]

That it was normal for pregnancy...but I am just so worried, I keep trying to check.

 

[Ms. Pie]

Twitching only, is only twitching. Not ALS. Relax. Have fun with your kids. Anxiety isn't good for the baby that's feeling it too. Find coping techniques. Hugs to you!

 

[Nikki J]

Please talk to your doctor about your anxiety. No weakness no atrophy normal neuro exam yet you are so scared that you are asking random people on the Internet about a test the doctor said was normal. I am not trying to be mean here but truly you need to get the anxiety under control. It is not good for your your baby or your family. Tell the doctor how scared you are and let him or her help you.
Good luck
Nikki

 

[lynnecline]

Thanks for the kind replies. I think I may even be confused by Creatinine (which is what I had tested), and Creatine phosphokinase which I did not have.

I just don't know. I am just a mental case. But I am getting professional help.

I do think you all very much for taking the time to respond; I appreciate it very much.

As an aside, does anyone know of a way that I can volunteer to help ALS patients? Would I just contact an ALS association, or go through a local hospital?

 

[Nighthawk]

Thanks for the kind replies. I think I may even be confused by Creatinine (which is what I had tested), and Creatine phosphokinase which I did not have.

I just don't know. I am just a mental case. But I am getting professional help.

I do think you all very much for taking the time to respond; I appreciate it very much.

As an aside, does anyone know of a way that I can volunteer to help ALS patients? Would I just contact an ALS association, or go through a local hospital?

Creatinine is a breakdown product of creatine, which is an important part of muscle.
It has nothing to do with ALS.

It's measured to determine how your kidneys are working because the kidneys are supposed to remove it from the body.
If Creatinine levels are elevated that means your kidneys are not successfully removing this breakdown product from your blood and there might be a problem with your kidneys.

A normal result is 0.7 to 1.3 mg/dL for men and 0.6 to 1.1 mg/dL for women.

Females usually have a lower creatinine than males, because they usually have less muscle mass.


Creatine-Kinase (also known as CPK) on the other hand, it's a totally different test.

When the total CPK level is very high, it usually means there has been injury or stress to muscle tissue, the heart, or the brain.
Muscle tissue injury is most likely. When a muscle is damaged, CPK leaks into the bloodstream. Determining which specific form of CPK is high helps doctors determine which tissue has been damaged.


Regarding your generous help offer for PALS (Person with ALS) you should contact directly your Local Chapter of the ALS Association and let them know in which ways you can be of help to them (and, ultimately to us, PALS).


Regards,


Carlos

 

[lynnecline]

Thank you Carlos for your detailed response. That helps me understand. I do have one small follow-up question: in my mind, a lower-than-normal level of creatinine may have something to do with ALS because if it is lower than it should be or lower than it was previously, and it has to do with muscle mass in some way, it could show that I have lost muscle mass and that with the twitches could point to trouble. However, it seems like the more likely case of me not understanding completely and being a hysterical basket case

I have contacted the Indiana chapter of ALSA to see how I can help.

 

[Nighthawk]

Hey,

Low than normal levels of Creatinine in blood still have nothing to do directly with Amyothropic Lateral Sclerosis(ALS).

Creatinine is a by-product of the metabolism of Creatine (Creatinine NOT the same as Creatine, they are even spelled differently).


***Low values

Low blood Creatinine levels. Low blood creatinine levels can mean lower muscle mass caused by a disease, such as muscular dystrophy, or by aging. Low levels can also mean some types of severe liver disease or a diet very low in protein. Pregnancy can also cause low blood creatinine levels.


If you are pregnant, that might explain why your Creatinine levels in blood were low.


Hope this helps.


Carlos

 

[Nikki J]

Ok again creatinine is lower during pregnancy the bottom normal range in pregnancy is .4. The reason for this has NOTHING to do with ALS or loss of muscle. It is because when you are pregnant you have an increased blood volume which causes you to excrete ( get rid rid of) more creatinine resulting in lower levels of creatinine in your blood. You seem like a very sweet lady and it is really nice of you to reach out to help PALS. Thank you for that!

Take care of yourself and your baby
Nikki

 

[Barbie]

Lynne, it is very obvious that you have health anxiety and have had it for a long time. Being pregnant and having young kiddos is very stressful, but you are making it worse. You said that you have been reading this forum for a year---please, do not do that! that is very unhealthy for you! This is a place for PALS and CALS, and you thank goodness are not one!

I would strongly suggest that you get some therapy before that baby comes, do not read this forum AT ALL (sign off now and make a commitment to spend the time on something fun for yourself or with your kids), and DO NOT volunteer to help PALS. I dont' think you need to be around people with this disease if you suffer from health anxiety. You could make a donation to your local ALSA, but that would be enough.

Kids grow up so darn fast, and you are lucky that you will get to be there for that. Good luck to you!

 

[lynnecline]

Thanks so much for the replies. You all are right, I obviously have health anxiety. I saw a therapist this morning, and he had that pegged pretty much right away. I just don't want to pass everything off an anxiety, lest I miss something. Kinda like 'just because you're paranoid doesn't mean people aren't following you' mentality. But I have to get a handle on it, because I am so short on nerves and keep griping at my kids just for being kids. I don't want this to affect them.

Again, thanks so much for taking the time to read and reply. And, Barbie, I will take your advice into serious consideration. I would love to help, but I need to make sure it is not at the expense of my kids.

 

[Nighthawk]

@lynnecline:

I agree with Barbie's post.

You should stop reading these boards as the reading of a dreadful disease that you do NOT have makes you more stressful and makes no good to the baby on the way.
Instead, prepare for your maternity and enjoy time with your other kids, your husband and your friends.


Regards,