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Compass Rose

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Hi all.

My dear brother was diagnosed with ALS three months ago. He had an appointment not long after that to do some pulmonary tests and was scheduled to see his neurologist this week.

But he got a voicemail from the neurologist's office saying the appointment was canceled because he'd already had an EMG (the one that confirmed his diagnosis three months ago). He called and left a message with the neurologist's office but hasn't heard back yet.

My brother isn't overly assertive or one to ask a lot of questions, unlike me. I'm hoping that that's how I can help him and my sister-in-law as things progress, by asking questions and getting as much information as possible.

So my question is this: after someone is diagnosed with ALS, what are typically the next steps? Should there be some follow-up and monitoring with a neurologist to see how/if the illness has progressed? Or do people who have been diagnosed just wait until the symptoms start increasing?

This disease is so awful and surreal; I sometimes think maybe my brother doesn't really have it, because other than some weakness in his hands, he seems okay. I just wish things could stay the way they are at the moment.
 
Your brother should find an ALS clinic... Where do you live? My father in law hasn't been diagnosed yet but his neuro treats him like he has. He goes to the ALS clinic at Columbia in NYC and he meets with his full team (pulmonary, speech, neuro, ...etc) every three months to monitor his progression.
 
Hi Compass Rose. It's unfortunate you have to be here. If your brother has been diagnosed with ALS then chances are he has it. Is he going for a second opinion. Is his neurologist part of an ALS team? They may have cancelled his EMG but his breathing, swallowing, strength, etc. will most likely need to be assessed soon. At least that was the case in our situation. Keep calling the neurologist's office. You or your SIL should contact an ALS Clinic as well as your local ALS Society. They will both guide you through this disease , the first monitoring health and writing prescriptions for some equipment and the other to provide you with loaner equipment and information. My other bit of advice is to stay informed about ALS and stay at least two steps ahead of it. There's so much information on ALS available online including the many knowledgable and caring people on these forums. When your SIL and brother are ready, they might want to join the forum too. Take care. Yasmin.
 
Many of in the US are followed in a certified ALSA or MDA ALS Clinic. These are the best places to get involved in a Clinical Trial. At my Clinic I am seen every three months to monitor progression, weight, and to ascess needs for equipment, medication, etc. I am assigned to a treatment room and wait there for a variety of specialists to make their assessment, recommendations, and answer any questions I or my CALS may have. The specialists include: Dietitian, speech Therapist, PT, OT, RT, Social Worker, and an ALSA or MDA Represative. I was also fitted for my Power Chair in Clinic and they also have techs on site to help with communicattion devices when needed. The Neurologist them does an exam, asks about problems, makes his recommendations and orders any follow ups or medications that may be needed. I especially like the "one stop shopping" approach. This is even more important to me now that it's getting more difficult to get in and out of the car. I continue to see my local GP for any other needs that occur.

The multidisciplinary Clinic approach has had good reviews and some veterans are lobbying for this to be made available to all Veterans with ALS.

Some of our members see local specialists of their own choosing as their needs develop and are content to do so if they have a good rapport with their local Neurologist. Some Neuros may see PALS rarely in their practice and may not be as knowledgeable about the nuances of the disease as some of the Clinic Neuros who deal with PALS on a regular basis.

I've found it very important to be proactive in dealing with ALS, trying to say a step ahead of my needs. I've found the Clinic approach to be helpful with anticipating these needs based on their assessments and ordering things in a timely manner.
 
So good of you to be looking out for your brother!
The progression rate varies so much, let's hope your brother's is slow.
I choose an ALS ClInic. My Post went to moder action. PlEase look for it later.
 
Apointments every 3 months at an ALS/MND clinic. Multidisciplinary team of OT, Physio, Speech and Language Therapist, Dietician- as and when needed. Monitoring progression - further weakness which may result in various aids needed, monitoring respiratory function via FVC and MIP/MEP - in order for early Bipap intervention. If bulbar symptoms present early PEG insertion advisable, but in any case before FVC drops below 50 percent.

All the best, D.
 
So sorry about your brother. But, welcome! My neurologist met with me after my diagnosis to discuss the illness, my questions, and then gave me a listing of the ALS/MND clinics in my area and explained that I should choose a clinic and that would be my doctor moving forward. Perhaps your brother could ask for this type of 'question and answer' appointment with his neurologist. Not sure I would've been able to 'find' the clinics on my own.
 
Is your brother a veteran? If so he needs to contact the VA as they will be able to help in many ways, not the least is income because ALS is considered 100% service related. This may take some time and you will need an advocate like the paralyzed vets of America to help.

Jen
 
The best thing about the ALS clinic, in my opinion, is all those appointments, for all those specialist, is in one place and in one day. Its a long day but it' so much easier then having to go to seven different places in seven different days.
And they have all seen ALS. Where I live our area hospital and doctors do not know to much about ALS.
 
Rose,

You are a caring sister. I have 2 sisters - and their love means the world to me!

In my case, I was diagnosed on April 5 (EMG day) by the neurologist. Little info. provided that day, except that we would meet again. (he knew we could not absorb much past the dreaded letters ALS). Three weeks later, on a Saturday morning, my neurologist called to see how I was fairing and re-assured me that we could call him "anytime - for anything". My 2nd appointment was Aug. 16th; he spent more than an hour answering questions graciously & unhurriedly. We discussed EVERYTHING - he is referring me (us) to the ALS Clinic and explained the process. We left that meeting optimistic for the future and emboldened by his encouraging words which were not by any means sugar coated - just delivered in a caring manner. (in fact, he held my hand throughout). I will be seeing him again in 6 months, but he reiterated, that should anything change, or if we have other concerns, he would see us anytime. Personally, I think he is one of the most compassionate doctors I have ever met. I am lucky. (I've read horror stories from those with less than adequate physicians). I suspect his deep seeded empathy is also due to ALS having hit his own family (mother-in-law). He told us she lived FULLY with ALS for 5 years and got to meet all of her grandchildren. That statement alone gave us hope.

Your brother will do well, if and when he's ready, at the ALS clinic. I understand the team will help us through this and moreover help us stay a bit ahead of it in terms of preparation.

Remember Rose, having a sister like you is your brother's best medicine.
 
Thank you for the kind words, Elaine and Deb, and to everyone for the helpful advice. Jen, no, he's not a veteran.
It sounds like he should go to an ALS clinic, even though his symptoms haven't progressed too far yet. He's seen a PT and a naturopath, but it seems like it would be helpful to have his information in one place, with various people working with him. He lives in a small town and I'm not sure how good his naturopath is. I was dismayed that they just left him a voicemail about his appointment being canceled, with no further information.
I will look into where the nearest ALS clinic is to him. Thanks very much for the input.
Danijela, I read a few of your posts last night and my heart goes out to you. I wish you strength on your journey.
 
I also went to a Naturopath the first visit he said he could help me the second visit he told me not to come back because he couldn't help me. I don't think he had seen this disease before and did some reading dicovered there was nothing to be done.
 
I wrote very early this morning but my post got moderated. Same as what others have suggested. Yasmin.
 
It seems a lot of posts here get moderated. ?
 
Sorry about your brother. We joined an ALS clinic that is sponsored by my husband's neurologist. As others have stated we go every three months for follow ups. You will find lots of support here and sage advise.
 
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