Long time twitcher, but recent changes have me concerned

[HelpNeeded46m]

First thank you all for your time and apologies for posting.

Long story and I'll try to keep it short.
I started twitching in my calves in 2006 after a spinal injection for pain in my lower back. I have had mild stenosis and lower back pain the majority of my life. I'm 46 now. Any way I went down the rabbit hole and managed to see so many specialists including a clinic in the NY area. All said benign and get some help with my anxiety. So I did and moved on with life. I do suffer from GAD and in particular health related anxiety.

I had another flare up/scare in 2012 but managed to lose my mind and went on with life, working out and doing all things fine. Fast forward to 2020, very stressful time with Covid, new job and I caught Rocky Mountain Spotted Fever to boot (tick born virus). Anyway, I was treated successfully with antibiotics for 30days. Then the twitching went bonkers in my calves/thumpers all over. I lost my mind and literally had a nervous breakdown. Again, MRIs/clinical exams/EMGs all pointed to benign. I slowly got therapy and worked on getting my anxiety under control with meds as well. Again, I moved on.

Now, this past February, after an intense/stressful dental procedure I started twitching but this time it was in my right arm/elbow. It lasted for 5days straight and finally chilled out... but I didn't. It went everywhere in a matter of a week and I started to go back down the rabbit hole. Then I got slammed with Covid for the first time ever, it really messed up my back and I started having a weird right leg thigh pain/ache. I lost all taste/smell had vertigo and started twitching all over intensly.

Now... I've seen my pcp, covid has cleared and my taste smell is back as of a two weeks ago. I have my appetite again and I'm starting to calm down a bit with therapy helping again. I'm back on ssri's with xanax as needed, but, I'm twitching still in my calves (there kinda 24/7) but what worries me is the right thigh, its twitching where the pain/ache is now. This ache is always there when I stretch it or lift the leg. I feel like its weaker as well (I'm right dominant) my PT said it felt slightly weaker then my left. The pain can be felt while I lay on my side at night as well. It feels like a strained/pulled hamstring maybe, then never goes away. It's been 5 weeks now with this ache/tightness/pain and I'm still twitching in that spot. I'm being sent for another round of mri's/emgs. I can still weightlift, walk and run without issue. I just feel this burning ache in the thigh/quad when I extend or overuse it. The pain burns when I lift and it feels weaker compared to the left leg... like I can lift with it, but it takes more focus to do it if that makes sense?

On another note, my bloodwork came back with very high-levels of the antibody for that tick virus I had, like its through the roof high. But my pcp disregarded it as it's not an IgG or active infection but the IgM (which I have) is indicative of a very recent infection. My CK was normal and within range. Nothing really else showed up in the blood just high cholesterol.

I'm sorry ahead for posting, I'm just very concerned.

 

[ShiftKicker]

Hello there-

First, have a read here: Read Before Posting. As you'll see, sensory stuff, things like burning, aches, etc, would not give a doctor concern about a disease of the motor neurons. Twitching is one of those things, like coughing, that is so general, that it can not be used as any sort of indicator despite what online searches would have you believe.

Second, it sounds like you already have a possible explanation for your body-wide symptoms. I recommend you also read here: COVID and Neurological Symptoms.

Hopefully that's reassurance enough for you. You don't report the pattern of symptoms that would give any doctor concern about a neurological issue, let alone ALS.

Take care

 

[lgelb]

I would ask about a PT evaluation, but I agree that ALS is not in this picture.

 

[HelpNeeded46m]

Thank you for your reply. I took a look and there seems to be some correlational for sure. I will bring this up with my pcp or neurologist. Really appreciate your help!

 

[HelpNeeded46m]

Quick update. I had a full clinical yesterday with my doctor and I'm happy to report nothings changed since my last visit with him. His exact words were "this is your baseline". He feels I do have some pulled muscle in my right glute. He was also nice enough to spend over an hour with my reviewing my recent mri of my lumbar spine. I have some facet joint arthritis/small disk herniation but nothing impacting the nerves. He felt an EMG isn't warranted given my history and previous one. Just thought I update you fine folks. Thank you for being there for me!

 

[HelpNeeded46m]

Hi again. I can't kick this endless worrying. My right thigh just continues to twitch. I have an appointment with a nuero this coming Tuesday and I'm extremely worried. What gets me is nothing is getting better. I can go a week of not exercising to try and rest the leg but the twitching remains and the minute I lift the leg or add any type of resistance it "hurts". Could twitching with aches/pains in the same area be indicative of the thigh muscle trying to accomodate the loss of other areas within the leg? Additionally, adding to my worry is the fact I can't sleep more then 4hours at a pop. I wake with awful urgency to urinate. I've also been urinating frequently more and more throughout the day. I'm so lost and really am convinced the orthopedic missed something during his exam last week. I'm not sure what I'm looking for from this post other then just updating you fine folks that I'm no better and spiraling out of control.

This is almost 3mos now with this new thigh hotspot. Would I notice real weakness? Would aches and pains in that muscle be aligned with this timeline? Would the ortho who knows my baseline from a previous exam just not catch it or maybe he is hiding his findings since he saw how worried I was? I'm lost and truly am sorry for posting again.

 

[Nikki J]

It doesn’t sound like als. Doctors do not lie to you. They don’t risk their licenses to make you feel better. PLease do not post again until you have results from your neuro visit

 

[HelpNeeded46m]

Quick update from the visit with my neurologists. He spoke with me while reviewing my history and then later did a brief clinical exam of my strength and reflexes. Based on my lumbar mri showing "diffuse" facet joint arthritis and a small herniated disk he believes its that in addition to my extreme anxiety. He has started me on muscle relaxers and gabapentin and I go back in 6 weeks. My thigh still hurts and twitching continues. I'm still very, very concerned as the leg twitching, soreness/pain feeling hasn't let up. But thats all for now. Just thought I follow up with everyone.

 

[Nikki J]

As Shiftkicker told you and it says in the sticky sensory symptoms point away from ALS. Your soreness/ pain is consistent with your lumbar issue though. Twitching as it also says in the sticky is non specific. It would also be consistent with your spinal diagnosis

 

[HelpNeeded46m]

Thank you all for your replies. I am and will follow the guidance of my doctors including the neurologist I'm working with. I just am finding it hard for all of them to listen to me and take me serious. Yes it's true I have been twitching for a very long time but never really had a hotspot in any other area then my calves. The thigh/hamstring area is so new and the pain/feeling is actually affecting my quality of life. I do try to explain this to them but it's all written off mostly to anxiety. One last quest for you fine folks, the area in my right hamstring seems different then the other left leg hamstring. Does this look concerning? I tried pointing this out to the doctors and they said nothing and disregarded it. I promise this will be my last post and I'll move on if you all think I'm seeing things. But the right looks different then the left and I'm right dominant.

 

[Nikki J]

We don’t do pictures here. They are not helpful. If your doctors who saw you in person weren’t worried we certainly wouldn’t see anything on a photo

 

[HelpNeeded46m]

My apologies. Thank you.