Undiagnosed Strange Symptoms

[LisaM19]

Hello,

I am a 31 yo F and I have been having health issues since July 2023. Started out with calf pain and tightness in both legs. Feeling like I ran miles after only walking short distances. My PCP said I probably injured my lower back and gave me steroids and muscle relaxers. Neither helped the pain. The pain however would completely go away with rest. Next they tested me for peripheral artery disease. ABI test was normal. Walking became harder. Spinal stenosis was their next thought. MRI ruled that out. Getting to the point I can barely stand without legs shaking and pain. Need a motor scooter to go shopping. Wfh because I can’t make it in the office. Now my arms are affected. Very weak and sore when washing hair or doing everyday tasks. Getting an emg this week. But even my drs are confused which scares me. Basically I’m weak and sore from my neck to my calves. Even if I flex my calves in bed they cramp up. I’m so scared it could be ALS as not one Dr can come up with an accurate answer. Lab work was fairly normal. I have a history of high platelets and my CK total is mildly elevated. Any thoughts?

 

[Nikki J]

You do not mention your clinical exam results.

You do speak of a lot of pains and discomfort which doesn’t sound like early ALS. However you are going to have an emg. If this is a highly atypical ALS with the degree of disability you report it will be glaringly obvious on emg. Bear in mind that emgs ( and the nerve conduction studies that are usually done with them) look for many different things and can be abnormal in many ways. Most are unrelated to ALS so do not panic if your report starts this is a abnormal study. The emg will either give an answer, a direction in which to look or rule out a number of things. If you are currently seeing a neurologist and they do not have a clear plan after seeing results ( which may be different tests,that is fair) it would be time to look for another

 

[LisaM19]

Dr said I have minor weakness in my left arm and leg. They also shake if I hold them out for more than a few seconds. I have no numbness or tingling. Occasionally I will have twitching in both upper legs. I am currently seeing a rheumatologist. Couldn’t get in with a neurologist until later February. I’m assuming they would do a brain MRI. The pain was reassuring me that it maybe wasn’t ALS. It’s the weakness that really has me worried.