Nervous and trying to get answers.

[Throwitaway]

Hi, friends. First of all, thank you for your time in reading this. I’m so sorry that you have reason to be in this forum.

I am extremely concerned with my symptoms and am praying for someone to tell me they aren’t definitive of ALS.

I (30F) begain experiencing back pain in august which progressively got worse. In October, I woke up and could not walk due to the pain. I went to the er and was sent home after steroids. It took a few days for me to be able to walk again but it did gradually get better. I am now able to walk but I’m still experiencing weakness in my legs and find stairs and inclines very difficult. I had thought this was all due to a disc issue however I had my MRI yesterday and the neurologist said my spine looks good. He suggested SI joint pain but I don’t see that causing me to be unable to walk.

About five weeks ago, I began experiencing muscle weakness in my right arm. It can still function but it is much weaker than before. I feel some of this weakness in my left arm but not to the same extent. I’m also having extremely tight muscles in my legs.

I’m noticing a ton of popping in the joints in my back and small muscle twitches that began a few weeks ago and occur all over my body.

I mentioned my concern to my pcp and she stated that she wasn’t concerned about ALS because my blood work looks good. They also tested for lupus and RA both of which came back negative. (With an ANA panel and an RA panel.)

I mentioned my concern to the neurologist who viewed my MRI and he prescribed me pt for my arm/neck. He also looked at my tongue for five seconds and said “you don’t have ALS.” He said that what I’m describing is nerve related and may be neuropathy but didn’t suggest any testing or follow up.

I am going to call Monday morning and request another appointment asap because I don’t feel like my concerns were really heard. I’m frustrated because I’ve been trying to get answers for months and I’m honestly terrified that it’s ALS. My anxiety is through the roof and I am fixating on it as much as I’m trying not to. I appreciate your time in reading this and possibly responding.

Also a note: I am aware that I have health anxiety. I am taking anxiety medication and going to therapy weekly.

 

[lgelb]

I don't see any reason to worry about ALS, truly. It doesn't show up as you describe.
I'm glad you're working on the anxiety, and having been unable to walk for days understandably has your attention.

My two suggestions: see a rheumatologist even though a couple of autoimmune panels were negative, and if that isn't fruitful, see a physiatrist (rehab specialist) for an evaluation. If nothing comes of either, you can be more confident that there is no serious physical threat.

 

[Throwitaway]

thank you so much for taking the time to send me such a kind reply.

I am 90% sure it is fibromyalgia however I’m still a little concerned because I’ve noticed some notable loss of muscle in my leg. That being said, I’ve been heavily relying on my opposite leg for three months due to pain so that could definitely be a factor.

My PCP also does not think it’s ALS but she is referring me to a neurologist in town per my request and due to my nerve pain and continual fasciculations.

I am hoping to get answers so I can hopefully rid myself of this debilating health anxiety. Again, thank you for your kind reply. I hope something good happens to you this week, you’re an angel for all the reassurance I see you give to anxious people in this forum. I hope you know how appreciated it is.