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shadowlynn

New member
Joined
Dec 26, 2017
Messages
2
Reason
Loved one DX
Diagnosis
12/2017
Country
US
State
Iowa
City
Des Moines
My younger brother was just diagnosed last week after having seen several physicians to rule out stroke, cancer, etc. The neurologist he first saw detected nerve damage but didn't give him any additional referral or information. He was eventually referred to another neurologist in Iowa City, IA who ran some additional tests. He gave my brother a diagnosis of ALS but gave him NO information at all about the disease, progress, nothing. He is slightly mentally impaired so he had no idea of what to ask in regards to questions. When he told me the diagnosis I knew instantly what it meant. Since this jerk in IA City didn't give him any additional info or seem to care about follow-up at all, do you think it would be wise to get a second opinion? His left hand/arm are contracted, right side becoming so. Weakness in both arms and legs. Gait is unsteady. Some slurred speech. He thinks if he can just get therapy he'll get better. His primary doctor moved so I got him an appointment to see another MD tomorrow afternoon who is aware of the ALS diagnosis. We are trying to collect all of his medical records for the past two years for review. Any other suggestions at this point in the game? I feel so helpless!
 
Lynn, very sorry to hear about your brother. A second opinion is always wise, and also it would seem that your brother should be followed by a different neuro, so the 2nd opinion preferably will be driving distance.

A good PCP is also valuable but to get a wheelchair, which sounds like possibly a near-term thing, he will need to have a PT or OT involved, at some kind of ALS/SCI/mobility clinic. Perhaps if he likes the new PCP, he can get a referral from him/her.

There is a sticky about second opinions you might want to read.

If/as the diagnosis is confirmed, you will want to make sure your brother learns enough about the disease to be realistic about its course, so he can plan his life accordingly, with your help and support. I'm glad to hear he will have that.

Best,
Laurie
 
It sounds like Your brother needs a referal to a multi disipline ALS clinic. There he will be assessed by a neurologist, Physiotherapist, occupational therapist, speech and language, dietition, and a pulmonologist. Here's where to get all the information he's looking for. There's not a lot of good news here, but with the proper care and support the journey is easier. You can also look up the ALS Association on line. There are a lot bad days a head, but it is not all happening today, focus on today. It's really all any of us have.
Vincent
 
Lynn, very sorry to hear about your brother. A second opinion is always wise, and also it would seem that your brother should be followed by a different neuro, so the 2nd opinion preferably will be driving distance.

A good PCP is also valuable but to get a wheelchair, which sounds like possibly a near-term thing, he will need to have a PT or OT involved, at some kind of ALS/SCI/mobility clinic. Perhaps if he likes the new PCP, he can get a referral from him/her.

There is a sticky about second opinions you might want to read.

If/as the diagnosis is confirmed, you will want to make sure your brother learns enough about the disease to be realistic about its course, so he can plan his life accordingly, with your help and support. I'm glad to hear he will have that.

Best,
Laurie

Do you realize that all those abbreviations you use are meaningless to many of us. Especially we newcomers. We have no idea what your saying or talking about.
 
I apologize for my abbreviation tendencies. As a reminder, the search box up top can be your friend.

PCP=primary care physician, usually a family or general practitioner (FP or GP) or an internist
OT=occupational therapist
PT=physical therapist
SCI=spinal cord injury
mobility clinic=group within a medical center that writes up orders for wheelchairs and other mobility devices

Medicare requires when a DME (durable medical equipment) supplier such as Numotion or National Seating & Mobility (and many others) sends in an order for a wheelchair, that a PT or OT not associated with the supplier have signed off on it. So even though someone with the DME might "evaluate" you for the chair, a therapist has to be involved to the extent of a signature. If you have a pre-existing clinic with a PT or OT associated with it, that will most often be done behind the scenes, though you may have to bird-dog the process.

In some clinics, it is kind of the opposite, where the PT or OT drives the process and the DME is just the order taker. Either way, it's the DME that orders the chair and delivers it, and is your contact for repair issues.

Know in advance what the process is, and if you don't like it, say so. For example, some DMEs want you to drive to their site for evaluation or to do it all in clinic, but if your home has issues like thresholds, acreage, slopes, narrow halls/doorways, tight turns, etc., at the very least photos and measurements are required, and where photos and measurements are not going to do the situation justice, a home eval is required.
 
This should be a separate sticky, if it isn’t already:

PCP = primary care provider (I.e. internist or family physician, occasionally nurse practitioner)

OT = occupational therapist

PT = physical therapist

SLP = speech and language pathologist

RT = respiratory therapist

ALSA = ALS Association

EMG/ NCS = electromyogram/ nerve conduction studies
 
Thanks Laurie, our posts crossed.
I also forgot:
RD = registered dietitian
 
I appreciate everyone's input thus far. Has anyone heard of any link between ALS and physical trauma? My brother had a fork-lift accident at his job on 08/05/17 and was taken to ER to be checked for a concussion. Preliminary exam showed all upper extremity flexion was normal as were grips in both hands. I saw him a month later and that 's when I noticed his left hand and arm contracted as though he'd had a stroke. He got in to see his primary a few days later and that's when she sent him back to ER to have an EKG run to see if he'd had a stroke. That's one reason why I'm wondering if a 2nd opinion might be of value. Of course his employer was all about trying to blame his condition on something else so I'm sure they are "pleased" that Dr's are saying it's ALS so they don't have to pay anything for work comp. Would we be barking up the wrong tree if we were to pursue the thought that this physical trauma is what set off his ALS? Again, just searching for insight and input.
 
Don't beat yourself up ladies, if the new comers were patient and waited a little longer they would learn the way we all did. There is absolutely no hurry with ALS we all know that.
Al
 
Lynn, I'm glad for your brother to have you. Hopefully together you can get a 2nd opinion and more info. If there's a glimmer of hope it's not ALS it's well worth looking into this. That being said, you're in the right place here to get info and support. Look at the stickies, ask questions, vent, just don't try to deal with this alone.
 
Wife diagnosed 12-20-2017 and I think I know some of what your going through. Keep returning to this forum it really helps. I have learned a great deal in such a short time from all these brave and caring people. This desease is so encompassing that it is hard to take it all in.
 
I am so sorry you and your brother are dealing with this with insensitive assistance. My husband with no intellectual impairment acted as though he had no understanding what ALS was when he was in the diagnostic process. I believed that for a short while until I remembered he had to understand ALS because we had a friend with the disease and had discussed his prognosis numerous times. Letter, when he was diagnosed Brian would sometimes seem to think he just needed to do the right PT to hold it off indefinitely. Not saying this is where your brother is at of course but acceptance is a multilayer process.

I agree wholly with Vincent, get in to an ALS Clinic, a Certified Center to confirm the diagnosis. Regardless of if you decide to do follow up with them long term, they are really the best places to start. The disease is rare- less than 5600 cases diagnosed in the U.S. this year compared to 200,000 lymphoma cases. Even neuromuscular specialists who don’t work with ALS patients regularly tend to get confused by ALS and talk out of both sides of their mouths about it. We saw that for ourselves before and after Dx. Go to an ALS Center for the second opinion. It may take a few months to get in, but the certainty it brings is helpful.
 
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