Question from a neurologist

[new neurologist]

Hello to everyone. I am a neurologist who has subspecialty training in stroke. I am now in general practice and beginning to see patients who I suspect have ALS. I generally refer them to the local university which has a comprehensive team to evaluate and treat people with ALS more completely than I am able to do. However, I always feel sad to tell people that they might have ALS, particularly because I know that they have to wait 1-3 weeks before seeing a specialist to confirm (or refute) the diagnosis, and begin to recieve full care.

So, I would like to ask you all how you wish your neurologist told you (or your loved one) that you might have ALS? Which words were helpful, which were hurtful? I hope to learn from your collective wisdom.

Thank you

 

[Marjorie R. Wilcox]

How we were told

Hello.
We were told by the neurologist that something was definately going on that wasn't normal. He ordered a blood test for CK and found it elevated. He did reflex tests and other responsive tests and we were told that some were normal and some not. The first news that it was a motor neuron disease came after a couple months. We looked things up on the internet and didn't find anything encouraging, but I believe it helped us to know and understand everything. After the EMG we were then told it could be ALS. We didn't react any special way.... we just went home to look things up on the internet again and joined this forum. My husband accepts the diagnosis and is a model patient. He isn't afraid. We don't want to be a part of any study or medications until and unless we see many others cured 100%. We know that being 60 and not having to take meds is wonderful. He is controling his diabetes with diet and has healed a huge injury from an explosion he was in last summer. He had bone surgery as a result of that injury.
We know that his time could be short. We are taking some vacations together and making the most of whatever time he has to function outside. When he is confined, I will take care of him no matter what he has to have... like the vent/ peg etc.
I know people are different... just like women are different who are having a baby.
You can joke with some... some can take things well...others scream or are whimpy. I think you have to know your patient a little bit to be able to decide how to tell them. My best advice to you is to listen well and show compassion.... like by a gentle touch to the shoulder and a look in the eye of caring. Some expect a fast cure and medicine today!
Others know you are not God and cannot perform miracles. Just be ready to supply their needs for mechanical means of support as time goes by. Thanks for listening.
Thanks for your expertise in your field. I pray you are well appreciated and not just monitarily.

 

[caroliney]

The truth is appreciated

As a caregiver to ALS husband, I feel the truth is always appreciated. Our Neurologist never told us forthright until I actually insisted on him answering the question do we have ALS here?

Having said that, I believe an ALS patient has to have so many symptoms before the ALS diagnosis is stated.

Another ENT wrote the diagnosis down on a paper for me and never told my husband.
I feel by telling a patient that they have all the symptoms of ALS in a gentle way, is better as family can make preparations for this and the patient may want to do things while they are able to.

Also, written material on ALS is very helpful, as well as, the ALS Organization.
This disease destroys the lives of many very rapidly and time is of the essense in the early stages to accomplish your goals or desires in life.

May god Bless you,
Caroliney

 

[brooksea]

"Which words were helpful, which were hurtful?"

There are no words that can be helpful.

But, i will say that the compassion (key word) the 1st Neuro showed towards us was unbelievable. He gave us space and time to digest the diagnosed. He let us cry on our own and told us we could stay in the exam room as long as we liked. He even signed me on with our insurance as a patient in order to prescribe me antidepressants.

Subsequently, he has talked to my husband on several occasions at my husband's request and has no problem responding to inquiries.

We now go to Emory where Dr. Glass and his staff are very dedicated and compassionate about their patients.

Would like to add that although ALS is "rare" it would've been helpful to have an MDA/ALS magazine in the waiting room or some "sach."

 

[BethU]

I've seen six neurologists since my symptoms started 2 1/2 years ago, and had four different diagnoses. (Stroke, Progressive Supranuclear Palsy, MG and, now, ALS.)

There is no way to sugar-coat the information, but I would suggest telling the truth in an understanding manner, allowing the patient time to process the information and also come up with questions . . . and leaving the door open for hope until your suspicions are confirmed. i.e., "This may be something very serious called ALS, but you will need to see a specialist to evaluate your symptoms and test results. It is a tricky diagnosis to make sometimes."

If you have time in your practice to deal with phone calls or e-mail, it would be a great help to tell patients that you are willing to answer questions they may think of after they leave ... before they see the specialist. E-mail is good, esp for those of us with bulbar symptoms where speech is difficult.

The hard thing to deal with as a patient is when doctors are cold or uninterested, don't listen, and, especially, resent it if they know you are researching online.

When patients have a scary diagnosis and are left twisting in the wind for three weeks (or three months) before their next appt., they are going to try to learn more from any resource they can find! One neuro I saw, who otherwise was rather cold, knew I would be looking online (as I told him I would) and he printed out for me the URLs of trustworthy websites where I could find reliable information. That was very helpful and considerate.

Because you are asking this question, I can tell that you are the kind of doctor that patients will trust and respect. Bless you!
Beth

 

[CindyM]

I would just like to urge a bit of caution. Back in 2006 my local neurologist said he thought I had ALS, and my GP went along with him. They sent me to the ALS clinic for a second opinion and, since my EMG's were picking up re-enervation in 2 limbs and fasciculations in a third, the clinic said it was too early for a DX. Some clinics want very specific criteria and without it refuse to give somebody what is basically a death sentence.

As a neurologist, you need to know this. If I relied upon the conflicting advice of the doctors involved in my care, I'd be angry at the guy who first called it and confused that the specialists do not confirm it even now.

I think you are better off not saying what you suspect unless pressed by the patient. JMO, Cindy

PS: we almost sold our vacation home based upon what my local doctors were saying. People make big life-altering decisions when faced with this kind of news so at the end of the day I think the clinic is handling it correctly.

 

[hopingforthebest]

Dear Doctor:

My husband is 58 years young and has PMA classification of ALS. FVC's 24%, so breathing now an issue.

We started with a neurosurgeon that I work for back in May 2006, he did not tell me but told our nurse that he suspects ALS. I was in denial and refused to even consider it. We saw local neurologist that performed EMG, thought possibly MMN and treated my husband with IVIG for a year with no results. I finally said that I wanted second opinion from ALS clinic and there EMG repeated, spinal tap, and ALS director said PMA and to stop the IVIG. Our local neuro, who we like, told us we do not have to continue with ALS clinic, as it might be difficult. We continued to see both, to have local as our nearby backup and drove the mere 55 miles to clinic every 2-3 months. The benefit for the patient that is diagnosed with ALS with the clinic is phenominal. Remember, they see 600 ALS patients, where local neuro MIGHT see 2 or 3.

Anyway, before you send to ALS clinic please have an EMG done by yourself or locally,
complete bloodwork, to rule out whatever bloodwork can show. He tested for Kennedy Disease, Lyme, etc. But MOST OF ALL, HAVE YOUR STAFF SCHEDULE THE APPOINTMENT WITH THE ALS CLINIC AS A COURTESY. Just getting the news that possibly ALS is daunting enough and anything you can compassionately do to help your patient with this news comes back to you, sir/mam, as a blessing. Make sure YOU follow up with your STAFF, THAT ALL TESTING THAT YOU ORDERED, PERFORMED IS THEN FAXED TO REFERRING ALS CLINIC AND CONFIRM RECEIPT OF THIS FAX. Most important that ALS clinic doctor has before patient is seen.
When went to Hopkins for 2nd confirmation of PMA and I Fedex copies to doctor and carried a copy with us. When we got to Hopkins, Director there could not initially find my husbands records (our last name is unusual) and thank God I had a set with me.
Hope this helps you.
Our AlS doctor is the director of the clinic and I have never (and I have worked in medical field for 25 + years) met a physician like him. He is the most compassionate, kind MD ever and he leadership is awesome. You can email him and will get an email back same day. This is unheard of. In turn, his staff follows his lead and displays the same principals. If this doctor tell you that you do not have ALS, you can believe it. Have read posts on this site from people that have seen him and still insist that they have ALS. If we were so blessed to be told NO ALS, we would leave and give thanks to God.

Compassion with Care= success! Good luck to you!

 

[stilljoyful]

I read it in my file on the way to a second opinion. Not a good way to 'hear'.

 

[cajuntexusa]

Our neurologist said "Well we did all the tests that we are going to do and we are confident that you have ALS". We sat there in the state of shock waiting for the next sentence. "and there is no cure". "You can look up everything you need to know about ALS on the internet". After handing us my husband's death sentence, we came home, we cried and we started our search for a possible cure for ALS on the internet.

On personal note, I have met a lot of wonderful people here that are very supportive. I feel that they are in this with me every step of the way.

Regards,

 

[Peg B]

Hi,

Congratulations on the question. It is very kind and responsible for you to come here and ask. As I read the posts, I saw so many different responses, so I think you need to get really good at reading individuals or asking them straight how they want the DX.

My first DX came on my lunch break, with the neurologist asking me many questions and reading, correctly, that I wanted everything straight up. But I had dealt with symptoms almost 5 years. The initial half hour exam lasted almost an hour with me asking questions too. He said, he was not concerned with me having Parkinson Disease, but that it did look systemic, not just my finger. He asked me if I was familiar with ALS, I said I was. He said, "That is what you have." I said, "Do I have another choice?" He said, "No, but you need a second opinion." He referred me to the university ALS clinic. I went back to work and at the end of the day I went to my priest. (In fact, it looks like I may have MMN instead, as my progression is so slow.)

I hope this was helpful to you. There is no good way or one way to give the DX, and like the symptoms for each of us, the response to the news is different for all of us. God Bless you in this. It is painful to hear and give such bad news. Sincerely, Peg

 

[taratune]

Sometimes it doesn't matter how direct you are.

My brother was told that he either had ALS or something very close to it.....and that he would probably be in a wheelchair within 6 months and that he could die within 2 years. He told my brother that he should be seen at the ALS clinic ASAP........well my brother still thought he just had a pinched nerve in his back. It was a tough 2 month wait for us to get the 2nd opinion.....the ALS doc agreed but was still "not certain"......at his 2nd ALS clinic appt my brother was told that the ALS clinic would be happy to follow him......but they offered little. My brother can barely walk now and is loosing strength in both arms....but still thinks that he has a pinched nerve....or maybe a pinched nerve and a little stroke. I guess sometimes (at least some of us) can only hear what we want to hear no matter what is said.

Thanks for being interested.....this proves that you are well on your way to becoming a compassionate communicator.

 

[DeeMichelle]

Hi Good to find someone asking these questions..
My dad was ultimately told in a sensitive, but very direct way which was good. Though he was treated well I think he could have been given more information about what tests were being done and what they were testing for- he was not told directly that MND/ALS was the main query. I appreciate the difficulty with diagnosing ALS. However, we have FALS and I think he could have been better prepared that this was the suspicion for him.
Thanks for asking this.
DM

 

[citytom]

"I'm very sorry to say, but all the signs I see point to an ALS diagnosis. Get a second opinion at a ALS certified clinic/hospital as soon a possible. There are many diseases that mimic ALS, and they will be able to narrow it down. In the meantime, read all you can about it on the internet."

The above is what I would say.

 

[CindyM]

That sounds perfect, to me!

 

[brooksea]

I hope "said" neuro will check back for replies to his post, as I see he has not revisited since original post at 8:43 on 5/23. Sorry, had to look as I was curious as to why no response in all this time if they REALLY wanted to know!

What the H was that all about?

Hey correct me I'm wrong.