Is this ALS? Freaking Out

Status
Not open for further replies.

Morgan2107

New member
Joined
Dec 18, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Costa Mesa
Hello and Thank you in advance for your answers.

My name is Tom. I’m a 48 yo male ex military.

In June 2021 my Dr. Prescribed me Atorvastatin 20mg. It was my mistake in taking it. In August 2021 I got rhabdomyolysis from the statin. CK level was 5254. I stopped my Statin that day. In September 2021 I got neck and leg pain after riding my bike 2 times to start trying to get back in shape. I went to my doctor to see if it was rhabdomyolysis again. It was not but my CK levels were still high at 570 even though they should have been normal by then.

In late September I started having pains in my shoulders, hips, and the neck. Plus, a cough. I thought this was from the Statin drug toxicity. Those symptoms went away in to weeks.

In late November 2021 I told my doctor I had tingling pain in my legs, hips, and my neck. I had leg muscle twitches in both legs. I have had these symptoms for about 3 weeks. Plus I still had CK levels up above 500. My doctor and the other doctor in his office both told me I might have ALS.

I started freaking out that night. So far I still have the tingling in my legs and neck. The legs still twitch. Pain can back on hips and shoulders after sleeping on a hard mattress. But that might be getting better. The scariest problem I have noticed is some weakness in my right arm. I was holding a cell phone and in a couple minutes I had to use my other hand because my right got weak fast. Then when I was on a road trip this week, after about an hour I started to have pain in my right arm. After that I drove the rest of the way with my right arm in my lap.

As of December 15, 2021 my symptoms are as follows: I have some shoulder and neck pain. The neck pain gets a little worse by the end of the day. I have some burning or tingling in my legs, back, and neck. I also have some twitching in my legs. My right elbow joint hurts once in a while, along with two finger joints on my left hand. My CK level still elevated as of last test a month a a have ago. My muscles are getting smaller but that could be because I stopped doing much and I have no appetite. Last symptom is the intermittent weakness in my right arm.

Sorry about going on so long but I wanted to be through. I appreciate any answers you could give me. Thank you in advance.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,617
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry you were told that. As far as I can see this was based on twitching and your cpk level? They had no business telling you that as twitching is common and usually benign and cpk is nospecific and all over the place in ALS. Sensory symptoms point away from ALS so tingling and pain argue against ALS

so after dropping that bombshell what follow up testing and referral did they arrange?
 

Morgan2107

New member
Joined
Dec 18, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Costa Mesa
Hello and Thank you for your reply. First I’m getting new insurance this year along with a new Doctor. Then we start the testing. I’m very scared because my father used to tell me this story of his friend that got ALS years ago. He must have told me that story at least 5 times during the 7 years I took care of him. Thank you
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,056
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Myopathy due to statins can take several months to resolve. That your CK has not yet returned to normal suggests that you are still suffering the effects. So I expect the EMG will be reassuring as regards ALS. Do not let one inapplicable story scare you.

If you are not sleeping well due to anxiety, that is going to affect your appetite (and often ramp up any twitches), and of course activity is often a good way to get yourself out of a mental rut. You may want to talk to a counselor about all this while you await testing.

Do not blame yourself for starting the statin. Fewer than one patient on statins in a hundred has this problem. Sometimes the uncommon things happen. When all this is past, often you can do well on another statin.

Best,
Laurie
 

Morgan2107

New member
Joined
Dec 18, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Costa Mesa
Hello, I saw a picture of the ALS pain chart. I have all of the pains in the same areas even the itchy pain it said you would have on you Quads. My feet also have a burning pain. All of these have come on in about two months. Can’t get in the see specialist for 2 months. So I might know what I have before my doctors if the symptoms progress this fast. I think my taking Statins for two months is what is giving me these symptoms. I just hope it is not ALS. Thank you all for your reply’s.
D4B4FFE4-92EE-4D3F-96AA-63EA79567944.jpeg
 
Last edited by a moderator:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,617
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I have no idea where you found that. Was it made by a patient? Are you paralyzed, being suctioned and using ventilatory support? If not it is pretty much inapplicable to you
 

Morgan2107

New member
Joined
Dec 18, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Costa Mesa
I just found the image when I looked for a pain chart for ALS. I have this waxing and waning neck pain, both shoulders hurt, both elbows hurts. I have some join pain in the hands. Legs and feet burn and twitch mostly in the mornings. I have tingling pain on my uppers quads. Hips hurt some. Thank you for your reply. After both those Doctors told me I had ALS I have really started going crazy.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,466
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
This chart is for someone who has significant ALS progression and, as a result, experiences pain from having lost so much muscle from the disease that there is no longer muscle to cushion joints, hence the pain. This would not be applicable to someone who has full mobility. As for the itching, I don't personally know of any individuals who are itchy due to the disease.

Your doctors seem to have been quite quick to say they think you have ALS without clinical evidence and an EMG. What was their opinion based on? Certainly not your symptoms, so are there other things going on with you?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,056
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
We have discussed this. Diffuse pain such as you've described can relate to myopathy (rhabdo is a myopathy) as we already know you have, but not to ALS onset. And from what you've said, maybe start the new year with new docs.
 
Status
Not open for further replies.
Top