6 Months of Symptoms, no Neuro appointment in sight

[taylorcoxmotion]

Hello. First off, thank you for letting me join this community. I know that many of you are probably very tired of people coming in here with health anxiety and asking these questions. So I understand 100% if my post causes your eyes to roll and you move on. No judgment here.

The reason I am posting is because the healthcare system where I live (Greenville, SC) is insanely overloaded. I've had a neurologist referral for many months, and their offices won't even answer their phones. I once went in person to ask if there was a timeframe for an initial visit, and a very irritated lady at the front desk just said "we get to you when we get to you." So. Not a lot of help from the doctor at the moment.

I'm a 37M, father of two kids (8 and 6), decently active (jogging, cycling, walking).

I've experienced symptoms all over the map over the past 7-8 months. First came chest pains, that we've mostly assumed are due to costochondritis or some sort of inflammation issue. Then came paresthesia all over the body (not intense, but frequent - and I know that ALS is not a sensory issue and this points away from ALS). Then came muscle cramping (arms and legs). Then came the fasciculations - mostly my right buttock, then spreading to right thigh and calf, then right arm, then right shoulder, and now starting to pop up in my left calf. Then, about 3 months ago, my right temple started feeling stiff all of the time, like a smooth, flat stone was stuck in it. Then the left. A month after that, loud constant ringing tinnitus in the ears. For the past two weeks, my right arm and shoulder have had perceived weakness (no failure) and pain that can feel pretty severe, but does go away at times. This has started happening to the left arm over the past 3 days now, as well. Hand cramps have come and gone numerous times. My feet stumble a bit at times, but it's been that way for many years (a clumsiness my loved ones are all too familiar with). Sometimes I wake up in the middle of the night and my hands, arms, legs, and feet muscles are all stiff, and I have to work all of them until I have full, comfortable movement again.

The Physician Assistant at my local office (the only person who has been available to see me over the past four months) finally got me in for a brain MRI (no contrast) last week, which came back completely clean.

The words on my mind during all of this has been "health anxiety" and I'm familiar with BFS, but obviously haven't been able to talk to anyone about that yet.

The months and months of uncertainty and no answers, regrettably, have sent me to Dr. Google a few times, and I hate that, but I'm not sure how I could have avoided it given how crazy the pain and weird feelings have driven me.

For those of you who are much more knowledgeable about this process, do you see anything here? I have read the forum disclaimer, but I've also found people who refute some of the comforts within (though I do appreciate the effort).

Thanks again.

Edit: I also forgot to add the tongue and mouth cramps (no twitching, just pain). Those have come and gone for about two months now. Those are probably the weirdest feeling symptom, to be honest.

 

[ShiftKicker]

Hi there-

Sorry your searches brought you here. I seems you've already read the Read Before, so you're mostly looking for an actual person to provide the reassurance "just in case". Having health concerns and not knowing the reason can definitely make a person anxious. Sadly, online searches for answers usually provide the opposite of reassurance.

You report too many non motor issues for a doctor to consider MND/ALS. While it must be frustrating to not be able to access the medical help you require, this forum (and Dr Google) really can't replace it. While you are waiting for a neurologist, what are you doing to find assistance with your pain and systemic issues? It's not even clear a neuro is the specialty you need.

Please take care. Hopefully your PA can get the ball rolling with regards to your symptoms soon and start working on directly addressing them.

 

[affected]

Sorry you having such issues being seen Taylor, that is hard.
Honestly, no matter how you think you are connecting dots, you are not even remotely suggesting ALS.
However, it does not swing black and white from ALS to Health Anxiety.
There could be any number of things going on.
Maybe you could ask your doctor what else they think could be happening. We are not doctors here as you know. I just wouldn't even think neurological necessarily.
Try and open your mind to the many things that could be happening and talk it through with your doctor again.

 

[taylorcoxmotion]

Just thought I would give a little bit of an update on this, since you were kind of enough to respond.

Finally got to see the neurologist. At this point, I was dealing with a much higher amount of muscle twitching, mostly in my right limbs, and some in my face, as well as a bunch of tongue and arm pain.

I passed the neurological exam with no trouble. She ordered a whole bunch of blood work, none of which raised any red flags. So, she’s ordered an EMG, but has said it is most likely BFS. Hopefully the EMG will agree.

 

[affected]

Great news, thanks for checking in!
I'm guessing the EMG was ordered because you are so worried it is more than BFS.
Let us know the results.

 

[taylorcoxmotion]

Actually, no. I did my best not to lead the neuro on anything. Didn't give any sort of input other than what my body felt like.

 

[affected]

Thanks for clarifying. Of course the EMG is a tool that detects a huge range of disease and injury processes, so ordering one is good as if there is anything at all going on, you can get started in treating it.

 

[KimT]

You did exactly the right thing. I hope the EMG clears you of anything serious.