Are your symptoms ALS?

As always, consult a physician, physician assistant, or nurse practitioner if you are uncertain about your health. These guidelines will not apply to everyone.

A. If you have no symptoms other than twitching, tightness, and/or feeling weird or anxious, you aren’t weak or stiff in a disabling way in any part of your body (you can still do everything you used to, even though you might not feel like it), you are especially unlikely to have any neurological disease.

B. If your only symptoms are numbness, pain and/or tingling, you are unlikely to have ALS but if these symptoms make it more difficult to function, it takes a physician to rule out other neurological disorders, such as MS, peripheral nerve or spine problems, and some other diseases as well, such as diabetes.

C. People younger than 40 are also very unlikely to have ALS, though some diseases like MS and adult-onset muscular dystrophy are most often diagnosed in young adults.

If your parent or grandparent had ALS, keep in mind that even if they had a genetic form (you can check to see if they were tested for this), most familial cases of ALS start around the same age within the same family. So if your mother was diagnosed when she was 60, it's very, very unlikely that you would have the same disease at 25.

What can you try to feel better?
If you find yourself in scenario A, you can help yourself to feel better and clarify what to do next by making sure you are getting enough restful sleep, staying hydrated and eating a variety of nutritious foods that provide a balance of calcium, potassium, magnesium and sodium (an imbalance can easily cause twitching).

If you’re not sure of your diet, a no-sugar-added fruit smoothie or a banana can be a good thing. Undiagnosed diabetes can cause numbness and tingling. If the twitching only occurs at rest, restless arm or leg syndromes, which can be treated with drugs, are possibilities.

Reducing sources of stress, such as a tough job, keeping up with coursework/exams, a dead-end relationship or a long commute, can help, as can seeking help from family, friends and/or a counselor to see things in better perspective.

Above all, don’t shut yourself away from other people in real life. Talking about the things that stress you isn’t weak, any more than taking something for a headache. If you can’t function well, you can’t live well.

Also, using street or recreational drugs, even pot, Ritalin or alcohol, even if you have used them before, can trigger muscle problems since the potency of drugs is not guaranteed and there is a lot of adulteration in these days. If you are using, take a break, or at least switch to a different source, and you may very well see improvement in the way you feel and move.

Exercise and outdoor experiences that you enjoy enhance circulation, stretch muscles that may be tense and help your heart. Heating pads, hot tubs and massage can be helpful if your muscles are strained or have been asked to do more than they can handle.

If your brain tells you that you aren’t seriously ill but you sometimes feel anxious about what might happen anyway, it is usually wise to stay off the “health net” while you try some of the strategies above, including counseling if your health anxiety keeps you from your best life.

Unfortunately, anxiety can be contagious and objective information about your condition (like how "weak" you really are) is best obtained from a doctor. It's also very easy for one little thing to become several, fueled by the power of your mind (and often too much doomscrolling).

Also, remember that the vast majority of people are not on line with a daily health update. You might read something scary that turned out to be nothing or an error, but no one posted an update.

Still symptomatic? See a primary care practitioner.
If you’re still reading, because you have continuing symptoms that you are concerned about, you should probably see your primary care practitioner who will usually be an internist, family or general practitioner, physician assistant, nurse practitioner or gynecologist.

Sometimes your PCP will refer you to a neurologist (a physician who specializes in diseases of the nervous system) for further evaluation, so you might think that you should call a neurologist yourself. But your PCP can actually help you get a faster diagnosis or confirmation that you are not ill.

For example, your PCP can order blood work and any appropriate imaging (X-rays, CTs or MRIs). You will have less delay in getting an appointment for your PCP, and since s/he has access to previous medical records for you, s/he can more quickly consider known issues, even if they have never been treated, as causes for your symptoms.

In some health plans, you won't get a neurology appointment until your PCP refers you. And being referred to a neurologist by your PCP directly cues the appointment-setter at the neurology office that you are high priority.

If you don’t currently have a primary care practitioner, there are several sources to consult:

• "On demand" consults on line using national portals won't provide continuity of care, but may at least reassure you somewhat. To an extent, you can do strength and flexibility tests on video.
• Family, neighbors, co-workers and friends in the area
• The staff directory of a respected hospital
• Your health plan’s online or printed directory
• Online reviews, though you should take these with a healthy awareness that most people don't review their docs on line and so these reviews may be very atypical, as well as just angry or hopeful about their health
• Your local medical school, if there is one, has a full array of faculty and their bios are on line.

If your anxiety keeps you from meeting your obligations, like work or taking care of someone, Google “urgent care” or “immediate care” and the name of your city, for a clinic you can visit today, or “tele visit” or “telemedicine” and the name of your city if you want to have a phone call, e-mail or video discussion. Don't go to a clinic in a drug store, though; it's not equipped to help you.

The clinicians that staff telemedicine and urgent care facilities are the same types of professionals that staff traditional offices (MDs, DOs, NPs and PAs) and can help advise as to whether your symptoms need further investigation. However, since telemedicine providers are more conservative about the cases they accept, they may refer you to in-person care instead.

In COVID times, your regular source of medical care usually has a telemedicine option. Even if you need lab work, that can often be prescheduled at a lab closer to your home, to reduce viral exposure. LabCorp and possibly other labs in your area have an option to check in on your phone, then get texted when it's your turn, so you can wait outside if you prefer.

Could you have neuromuscular disease?
The strongest indication that you could have a serious neuromuscular condition is progressive muscle weakness that makes it difficult or impossible to do specific things that you used to do easily, which may include lifting your arms, using your hands, swallowing, breathing, speaking, standing or walking.

Should you contact a neurologist directly? People with a neuromuscular problem usually have visible muscle weakness and/or atrophy (loss of muscle that you and other people can see) — a loss of muscle and/or strength that other people have confirmed, since our perceptions of our own body can be deceptive. And this weakness does not get better overall, though some days may be better than others.

If your health plan and finances allow you to make an appointment with a neurologist directly and you have had to adjust your activities due to muscle problems (unable to do daily tasks, your job, child care, etc.), you could make a neurology appointment and then visit your PCP while you are waiting for the appointment.

Depending on what comes out of the PCP visit, you could keep or cancel the neurology appointment. If you do cancel, please do so promptly so another patient can take your slot.

If your PCP suspects ALS or a related condition, they will most often refer you to a neurologist.

The neurologist may reach one of three conclusions: (1) lack of evident disease or (2) other possibilities that should be worked up or (3) the suspicion of ALS as the most probable diagnosis.

If you do receive an ALS diagnosis, or a diagnosis of anything life-changing (MS, a brain tumor, myopathy) you will want at least a second opinion at an appropriate center. However, there can be considerable lead time for this.

What tests will rule out or suggest ALS?
If you are making the first visit to a physician after experiencing symptoms, s/he will examine you first and ask questions. If there are no signs of neurological or other disease, you may not need further tests. If there are problems that should be ruled out, even very common ones like nutritional deficiencies, you may have:

• Blood and possibly urine tests
• An MRI or CT of your brain and/or spine [usually this will require advance approval by your health plan, so it won't be right away]
• An X-ray of a particular bone or joint
• An electromyogram (EMG) and nerve conduction testing (NCS). These tests are often the final tests that confirm or rule out ALS. The NCS uses mild electrical shocks to your muscles, to see how they respond when they are resting and when they are required to move.
• The EMG is when small needles are placed in certain muscles to see how well and how fast the nerves that control them send their signals.
• A spinal tap or muscle biopsy, to rule out other diseases that can mimic ALS. However, if the EMG is definitive, often these are not necessary.

Preparing for a neurology appointment
You may need records from other offices. If they are not on anyone's portal, try to get them on one. If your records are electronic, you are able by law to get them in that same form.

If no online access is available, a web form or email may still work. If it has to be print, try to pick up your own records. But if the logistics don’t work for a pickup — for example if you've moved — give the office plenty of lead time to send them to you, check back frequently and emphasize that you are trying to rule out ALS, a terminal disease. Also, sometimes if the office you are going to calls or faxes, results get better. Don’t be afraid to ask.

If a clerk isn’t helpful, ask for her supervisor, the clinic manager or the physician’s medical assistant. Use online record request forms or email whenever possible so you have a record and can remind offices when you made the request. For practices that still want faxed requests, if you don’t have a fax machine, you can use a free fax service.

Of course, never give up your only copies of any printed records, no matter how safe they’re assured to be. That includes someone taking them “to be copied.”