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Default Getting a diagnosis

If you have a sudden loss of vision, the worst headache of your life, unexplained chest/arm/back pain that does not go away and/or sudden unexpected paralysis in any body part, stop reading now, have someone drive you to the emergency room or call 911.

So, you’re worried about a neuromuscular disease, such as ALS? The odds are very high that you have no reason to be. ALS is only diagnosed in two out of every 100,000 people worldwide per year. That means, not only is it rare, but the vast majority of people who think they have it, don’t. That’s the good news.

The bad news: people with ALS (PALS) and the caregivers who support them can experience delays of weeks, months and even years to get a diagnosis. Time and energy lost in diagnosis is time better spent on precious remaining life. Delays in obtaining an ALS diagnosis also have financial implications that may literally ruin lives.

So please read this sticky carefully. If you have real reason to worry about ALS or another serious neurological disorder, you should be seen promptly. If you don’t, you should have the help you need for your situation, but not, please, at the expense of someone who needs it more.

Are your symptoms serious?

Here are some guidelines. They will not apply to 100% of cases. As always, consult a physician if you are uncertain about your health.

A. If you have no symptoms other than twitching, stiffness/tightness, and/or feeling weird or anxious, you aren’t weak 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.

What can you try first?

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 fruit smoothie or a banana can be a good thing. Undiagnosed diabetes can cause numbness and tingling.

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. Forums are no substitute. 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. If you are using, stop what you have been taking, 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. Unfortunately, anxiety can be contagious and objective information about your condition (like how "weak" you really are) is best obtained from a doctor. Also, remember that the vast majority of truly seriously ill people aren’t around on the forums you read — they’re getting medical treatment and dealing with their symptoms.

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’s 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 [HMO] health plans, your PCP has to refer you to a specialist anyway, before you can make an appointment. 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:

• Family, neighbors, co-workers and friends in the area

• The staff directory of a respected hospital

• Your health plan’s online or printed directory

• Yelp, Angie’s List, Google Reviews, Vitals, HealthGrades, DocSpot and your local magazines, who often have “Best Doctors” issues. Though you may wait longer, you can also call your local academic medical center (clinics connected to a local medical school).

If your anxiety is preventing you from meeting your obligations, 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.

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 make it possible for 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, you will want to see a specialist in neuromuscular diseases, preferably at an ALS center (zoom in on this map to see your region).

If someone else who sees you over time agrees that you can no longer perform certain movements, rest and resetting yourself doesn’t help, you owe it to yourself to complete the diagnostic process as soon as possible. However, getting an appointment at an ALS center takes time, so if you can see a PCP or a general neurologist (to whom your PCP can refer you), that will probably happen first and could demonstrate (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, in which case you will be referred for or should seek a second opinion.

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 of your brain and/or spine

• An X-ray of a particular bone or joint

• An electromyogram (EMG) and nerve conduction testing (NCS). These tests, which are done by a neurologist who specializes in them, are often the final tests that confirm or rule out ALS. The NCS requires mild electrical shocks to your muscles, to see how they respond when they are resting and when they are required to move. The EMG entails small needles placed in certain muscles to see how well and how fast the nerves that control them send their signals. These tests can be uncomfortable so your physician will not recommend them unless they are necessary.

• 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

Preparing for this appointment is critical to getting the information you need. First you may need records from other offices. Try to pick up your own records, if cost is not an issue since you’re more likely to be charged for in-person requests), but if money is an issue or the logistics don’t work for a pickup, give the office plenty of lead time, check back weekly 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. You’re sick. They’re not.

If a clerk isn’t helpful, ask for her supervisor, the clinic manager or the physician’s medical assistant. Use online record request forms whenever possible so you have a record and can remind offices when you made the request. For practices that want faxed requests, if you don’t have a fax machine, you can use a free fax service like FaxZero to send and k7.net to receive, both via Web forms.

If your records are electronic, you are able by law to get them in that same form. Note: Never give up your only copies of any records, no matter how safe they’re assured to be. That includes someone taking them “to be copied.” The Vocatus project provides a means for you to request records from anyone on line, and will keep pinging as long as it takes.

What to bring and store


So records and information to bring includes:

• Possible diagnoses that you want to make sure are excluded [in your own notebook, separate from your records]. Wait until you are examined and tested (if needed) before going through this list with the doctor, which you can do by phone or e-mail if needed.

• Brief chronology about how/when your symptoms began/progressed, and a list of current medications and major conditions (not the place for chronic toenail fungus or childhood fractures). This should all be on one page. Try to provide concrete examples, e.g. not “felt weak,” but “has been unable to use the bath tub since June, 2015 due to weakness on standing.”

• Contact information for any records that you tried and failed to obtain, and what those records are, and a copy of your request or release form

• Labs from the last two years, separately in date order. Imaging reports and CDs or DVDs with copies of the scans themselves, also separately, but going back further than 2y if you have them. Results of any exams where your senses (like how you responded to a tap on your knee) and/or strength were tested or atrophy noted (chart notes from a doctor).

**Bring items in a file folder, rubber banded if needed, never hole-punched or otherwise defaced.**

It is also good to start your own PHR, a personal medical record, which ideally is electronic so you are more likely to update it over time. You can scan documents that you have on paper and add them as well. The PHR that gets best marks for keeping your personal data private, only sending your record to those you request, and also happens to be free, is NoMoreClipboard. If you’d prefer, you can also download a paper form to keep current at MyPHR.

If you go the paper route, at least give a regularly-updated copy to all your docs, and to the person most likely to rush to the ER if something happens to you. Keep forms and a printout of your records summary on your refrigerator, in your glove compartment, wallet, purse and in your desk if you work.

During and after: What did you learn?

During the appointment, write down all tests that are ordered. If you’re not sure, ask what they are ruling out or meant to confirm. Ask questions like, “What differentials [alternative diagnoses] are still on the table?” “How will we rule these out?”

After the appointment, ask for copies of all reports (labs, imaging, chart notes) and add them to your folder and/or PHR. You may need a second opinion, and you will need care — coordinated care depends on good records — for the rest of your life. Make sure there is a plan of action — a referral to someone else, getting results to you within a specified time, more tests — and that you know what it is — before you leave the office. Obtain contact information for the person who will be responsible for following up with you, if that is necessary. If the expected follow-up does not occur, reach out yourself. It’s your health.

If you are fortunate enough to hear, “I don’t see any reason for further tests; you are fine,” believe it and rejoice. Ask for strategies that could help you deal with your symptoms better, make sure your file folder is up to date, and move on with your life, knowing some people are not as fortunate and need the clinic time that you don’t.

Summing up

For most people, the best course of action when your muscles don’t seem to be working properly is:

• First, try to address immediate causes like lack of sleep, poor diet and/or stress/overwork

• Second, see your primary care physician if symptoms do not improve and in fact persist or get worse

• But…if your symptoms are severe, consistent and leave you unable to move normally, you could consider making a neurology appointment immediately and seeing a primary care physician while you are waiting for the neurologist appointment.

Author's note: To share this post with someone not on the Forums, or have access to updates as they are made, the permalink is Getting a Diagnosis.

Last edited by lgelb : 12-10-2015 at 07:51 PM
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