Concerned about symptoms

[Elissxo]

Hi all,

Im a 26 y.o female, who has had 4 fevers since January. Last one being in May that lasted about 4 days. Mothers day I developed a really bad back pain that shot up my spine and caused a throbbing pain to my upper spine and head. I went to the hospital where they told me I had a viral infection. After that ive never been the same.

Maybe late June i started feeling a small aches all over my body, they told me to see a rheumatologist even though my ANA cane back negative. Then started feeling a small ache on my spine with tingling on my pinky and numbness on my right arm, the next day it was my other arm, later that week both my legs.

I went to a Neurologist and she sent me for MRI of spine and head, both clear. Still had numbness in arms occasionally. Recently I started to notice some nights I have spasms on the bottom of my left foot at night, then noticed a ache behind my left leg (calf) it seems to have gotten worse within these 3 weeks. It goes up behind my leg sometimes and can be excruciating, i also feel tingling on my knee. I sometimes feel the same pain on my other leg too!! Now this is where I get confused, I even sometimes feel pain in my neck going up to my head, and muscles aches on my back along with noticeable muscles spasms all over my body!

Now I know, ALS usually doesn’t present with pain, especially all over body (because i even get pain in neck and hands/fingers), but i can’t help but this its a possibility being that I had so many fevers/viral infections. None of my doctors seem to know whats wrong with me. I even been to the NYU ED, NYP ED, they don’t think its ALS because my age and I have no family history. They think it can be some sort of post viral syndrome/auto immune.

The muscle spasms all over my body is what scares me the most with muscle cramps waking me up at night on my foot! I also don’t have weakness on my foot/leg really. I can move my toes and ankle fine. My anxiety is just really bad and im not sure what to do anymore. The ER only checked my CK which is 106, and said that it should be reassuring. Im seeing a Neurologist today and am terrified.

If anyone can help, please please please and thank you.

 

[ShiftKicker]

Hi there-

It sounds like you've read the "Read Before" post, as you indicate you are aware that sensory issues are not associated with ALS. Your doctors have also posited you have post viral syndrome of some sort. ALS simply doesn't present like this. You are best served by listening to your doctors and believing them when they tell you ALS is not on the table. You may also be interested in reading the following: Covid19 and Neurological Symptoms.

Please do let us know how your neurology appointment goes.

Take care

 

[Elissxo]

Thank you, will do! I have GAD and not on meds for it, which often leaves me in a state of panic when I go into Google spirals. I see go to my hematologist (due to excessive bruising) and he calls me Dr. Google because im always anxious about a new thing.
However, my appointment is today at 1pm! I’ll update.

 

[Elissxo]

Hello all,

Due to muscle twitches almost all day everyday, my neurologist (2nd one ive seen) sent me for an EMG. Now the two i have seen told me they’re almost positive I don’t have ALS because my symptoms don’t allign and clinical/physical exam in office are normal.
The only symptom I do have is muscle twitches almost everywhere but mostly both legs.

Now, the leg that’s worse is my left and when doing the EMG they tested my right arm and leg (which came back normal). However, yesterday the muscle twitches were so bad in my left leg like it looked like 3 at a time was going off. I was so calm and had a peace of mind till then. I do have GAD and am on medication but can’t help but think worse case scenario. Tomorrow I will be going for a 3rd opinion with another neurologist who specializes in ALS, and will ask for a EMG on my left leg.

I most likely am overthinking this, however the twitching been here for over a month and it’s freaky.

I guess my question is, even though the spasms are worse on my left leg but still there on my right, will the EMG give accurate results? (Since they only did my right side)
The EMG was done on Thursday 8/8/24

I know this may be a lot so I apologize.

Thank you in advance. - also I know i shouldn’t google which is what I did and what freaked me out.

 

[Nikki J]

I am sorry you can’t accept the opinion of two neurologists AND an emg that was fine. You were having symptoms on your right side too. They don’t need to do an emg of every area. Do you really think you have als on your left side and your right side is something else. This is your anxiety speaking. I am also really sorry you feel the need to take a precious appointment with a specialist and then ask for another scarce appointment with the emg specialist

 

[Elissxo]

I really do feel like im going crazy. At some point im considering admitting myself to the psych ward because I knew this was going to happen. I told the people around me, im scared im going to get good EMG results and not believe it because my anxious mind. Hopefully, 3rd times a charm and i believe them… and also find out what’s really going on with me because no one seems to know.