Looking for advice

February 20th I noticed a twitch/spasm where my arm meets my shoulder, which was on and off for the next few hours. I was laying in bed when I first became aware of the situation, went to the mall to distract myself and it sorta worked but the spasm/twitches where still present. I figured it would go away with time. Fast forward to today and frequency has only increased, locations have spread to inner/outer thigh, calves, bottom of foot, back, gluteus, abdominal area and now the face ie. Eyes, forehead, mouth. Ultimately I'm just looking for advice, I'm having numerous other symptoms that have presented themselves as time has progressed. My first PCP NP, basically wrote all my symptoms of ass stress, I was rescheduling every two weeks as new symptoms occurred. Being a recovering drug user, a lot was blamed on my substance abuse in earlier years. At one point she said see me in 6 months which was a blow for me, because I feel my body changing but refused referrals or to run tests. Would comment "sounds like a vitamin deficiency " yet ordered no tests to verify. Eventually moved PCP this one orders test like B12, sulfate and A1C, to rule out which took place on May 5th which was about a month wait to reestablish with new PCP. Haven't spoken with her since. Seen a neurologist with a referral from the ER, with no test done other than a reflex test dubbed it BFS or benign fasciculation syndrome, in that consultation which I waited for about 2 months ended in about 10 minutes, that day we went to a movie to take my mind off of things and after walking around for a bit where my foot meets my leg tremendous pain started to occur, like I worked a 10 hour shift on my feet. Over the next two weeks I began to feel pain in my muscles that I've never felt before and is hard to explain. It's never for long periods but jumps around where the muscle/spasm would occur but long after, not immediately. I followed up with the neurologist 2 weeks later about May 20th and was re diagnosed with fibromyalgia, again no test and, Took about 10 minutes to come to that conclusion. I've been doing my best to be patient and not jump to conclusions, my frustrations lie with the research I've done. BFS can only be determined if all tests come up with no indication pointing to something specific. Because my muscle bulk looks good I don't have an MND, which frustrates me because the progression of most of these diseases doesn't specify atrophy is the first symptom/sighn as it's different from person to person. I had a video recorded of my spasms/twitches which was about 45 seconds, the spasm/twitches started at around 30, shook her hand and said yeah BFS, the video hadn't reached 15 seconds of play for her to even witness the spasm. I'm just looking for advice going into my next few visits, and some info,
Is the weakness black and white ? ie. One day your fine and the next you can't walk or do you notice gradual degrading?
Likewise is atrophy visible overnight?
Are muscle spasm/twitches apparent in the affected areas only ? Or is it possible to have weakness in the legs but spasms/twitches in the arms ?
Is the first affected area likely to be the first area to become unusable or can the first affected area fall behind a newly affected area?
Does stiffness sub side and return or always present and worsens?
Thanks in advance for any advice/help/insight and guidance

Spaccion, are you ready for some truth? I'm not sure, because you've not trusted your medical doctors, so why would you trust us? Well, if you are ready, here it is.

First, read the sticky post we've stuck to the top of this subforum called "Read Before Posting. This information about ALS in that sticky post should explain why you don't have ALS.

For a doctor (or someone with experience in ALS), your case is so obviously not ALS, I'm not surprised at all that your doctors quickly dismissed you. In fact, I thought it was irresponsible of the ER doc to send you to a neurologist.

ER docs are trained and experienced to stabilize a person in distress. They do not have a lot of experience or training in the diagnosis of rare diseases. And the doctor who ordered tests to find out if you needed vitamins...well, I hope they were looking for more than that. Whatever, they weren't looking for ALS.

You asked for advice. Read the sticky. Take a multivitamin. See a GP medical doctor and don't be surprised if she treats you for anxiety. As to your questions about ALS, I won't take the time because you need to read first, and second, we need to give our time to people who have ALS.

I have put all my trust in the medical industry which seems to be lacking imo. I've come back to read the sticky for over a month now and had some questions that have very generalized answers. I never claimed to have als or believe I did. My first PCP was not well at following up with information nor looking into problems until a solution was found. The ER wrote my referral because an ER visit and description of my symptoms pointed to something neurological, my PCP who worked under this hospital as an NP, failed to do considering how many times I had seen her. Switching PCP took awhile and she wrote a referral to the same doc as required by my insurer, and blood work to rule out things. Once again follow up was difficult and a 3 week wait for a visit. I had been on multivitamin i.e. Magnesium, calcium, b12 complex, multi. Like I said symptoms got worse. Blood work confirmed no abnormalities with that. I have been treated for anxiety and attend counseling on a weekly basis, so I'm trying every avenue available to ease symptoms. Why is there on option " I am interested n learning about als/MND" if you can't do that here? My questions are not answered in your sticky, there very generalized questions with very generalized answers. I feel my questions are not covered in that post that's why I figured I'd ask very specific questions.

Good question about why is there a "interested" option. So does that mean that you know you don't have ALS, but you're still interested?

If someone wants to take the time to converse about ALS with you, it will probably be quite interesting.

But curious: I think you've visited several doctors, yes? But gotten what for a diagnosis?

Correct. After expieriencing these symptoms, researching them and learning about cns disorders and MND, it hits pretty hard how most don't have any worthwhile treatments and they progressively get worse. I've seen 3, two NP, one Nuero muscle skeletal specialist. My problem with the NP's is the lack of communication and general desire to find the underlying issue. The Nuero tested my knee reflexes only on the first visit, describing the beginning of the symptoms and how they started I was cut off and told because I have muscle bulk she thinks there's nothing to worry about and called it BFS, with no testing or imaging done including blood work to rule out other diseases just Bam BFS in 10 to 15 minutes. Symptoms got worse and a few new ones emerged followed up and now the dx was fibromyalgia this time with no testing. I called to see if switch to a different specialist would prove fruitful but I'd have to be released by the Nuero I was seeing at the moment and I felt like I should trust her and made the follow up appointment but walked away feeling underwhelmed as again I coul not explain everything that was going on and based off of research you have to exhaust testing to come to such a conclusion and like wise, just because there is visible muscle mass does not mean there is no underlying condition which testing would prove and definitely shut me up but I can't seem to get that. I agree that I probably don't have als, but hearing how it develops unique to every individual with some overlap. I'm trying to educate myself as much as possible so I can advocate for something I feels not discussed enough. I've read it's not mandatory to report als result which is odd, you think that info would prove useful in a lot of different aspects of the disease

Another perspective, Spaccion: You have judged that your doctors are either unable or unwilling to pursue the path that you think would be satisfactory. You've done research (on the Internet, probably) and decided that your doctors did not adequately examine or test you.

Do your doctors represent a waste of 3 straight-A students going through years of medical school?
Or is it possible that the one factor in common--that's you--is wrong when you think you can judge them?

Spaccion, doctors are really smart and really well trained. 90% of the time, if they miss a diagnosis, it's because the patient left something out of their story. My wife was a doctor for 20 years. And 90% of the time, she could diagnose somebody in just a few seconds of observing them. She could even tell you which one of their genes had a defect before they even opened their mouths to speak. And 90% of her work was trying to educate the patient. Many times, there was just no way to get through to them. Don't be that patient.

Nothing you describe sounds like ALS to me. My "twitches" and cramps started in the limb that corresponded with weakness. It didn't migrate up the leg for about 3-4 months. Yes, everyone is different but please re-read what Mike posted. Mike lost his wife to ALS. Mike is very smart and takes lots of time helping others on this board.

If you aren't satisfied with what your doctors told you, either doctor hop (which is a waste of time and money) or trust them and live your life.