I’ve read that it can be hard to get an accurate diagnosis with anything neurological. My mother was diagnosed with Chronic Inflammatory Demylenating Polyneuropathy (CIDP), then Primary Lateral Sclerosis (PLS, slower form of ALS), and we are starting to believe it’s actually ALS. She had her first symptoms in spring 2021 and is now using a walker and unable to live alone. She really should be in a wheelchair and is falling more regularly. The doctors have been SO slow and I’m starting to get alarmed. She has one sided pain and it has progressed from her feet to her neck. We were trying to wait for an accurate diagnosis before selling her house and moving her, but the doctor continues to order more tests and say he is unsure. Has anyone had a similar experience? How long did it take to get the correct diagnosis? I’m not sure she has time to start all over with another doctor. She is struggling to get to the appointments and needs to make other living arrangements relatively quickly.
Different diagnosis first?
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Nikki J
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I am sorry about your mom. The diagnosis of pls is considered provisional for 5 years and many believe there is a spectrum of pls ( umn disease) ALS ( upper and lower) and pma ( lower). It is not uncommon for those at the ends of the spectrum to progress to the middle and we have seen it here. So you may be right. Has she had a recent emg?
Whatever the label you need to look at her function when making decisions about moving. Neither pls or als have cures yet and both progress. If she is falling with a walker she needs a wheelchair. See if you can get a loaner from the mda or als closet. Do not use her wheelchair benefit for a manual chair. She needs a power chair. People with pls get wheelchairs if needed.
If her current doctor isn’t providing care ( versus providing a label) she needs another one. You can pursue that without firing the current one. Everyone is entitled to a second opinion. Also if she does not have ssdi and medicare and has work credits an als diagnosis is helpful. There are som e neurologists that will call pls people who don’t quite meet the als criteria upper motor dominant als which can be helpful.
Whatever the label you need to look at her function when making decisions about moving. Neither pls or als have cures yet and both progress. If she is falling with a walker she needs a wheelchair. See if you can get a loaner from the mda or als closet. Do not use her wheelchair benefit for a manual chair. She needs a power chair. People with pls get wheelchairs if needed.
If her current doctor isn’t providing care ( versus providing a label) she needs another one. You can pursue that without firing the current one. Everyone is entitled to a second opinion. Also if she does not have ssdi and medicare and has work credits an als diagnosis is helpful. There are som e neurologists that will call pls people who don’t quite meet the als criteria upper motor dominant als which can be helpful.
This is helpful, thank you. She is worried that once she goes to a wheelchair she’ll never go back. But I agree it’s time. She’s working on getting a second opinion, it’s been such slow going. She’s had symptoms for a little over two years and now complains of painful spasms and deep “bone pain” along with neck pain and continuing weakness and fatigue. I’m hoping the next doctor will be a little clearer, it seems they’re hesitant to say anything they can’t absolutely prove. She hasn’t had a nerve conduction test done in over a year, but it was only UMN when checked.
Nikki J
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Re wheelchair. It can be hard to accept but there are multiple benefits. Conserving energy. Preventing falls. Injuries can accelerate progression. Increasing independence One of our late members was told sit now so you don’t have to. She took the advice and believed it allowed her to transfer herself safely for longer. If independence matters to her ( it does for many of us) embracing the technology will help
If you share your location ( or hers if different) we might be able to suggest a center for an opinion
If you share your location ( or hers if different) we might be able to suggest a center for an opinion
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My power chairs have given me freedom. I wouldn't hesitate to start paperwork for your mother's PWC. I know plenty of people with PLS, still young, who use them. If anything, it will preserve her energy so she is able to make transfers longer and not worry about falls.
I feel your frustration. I had symptoms for over 2 years before I was diagnosed. I had five EMG’s and still no definitive answer. I was diagnosed with peroneal nerve injury, myositis and autoimmune disease. The third neurologist who is a specialist in als diagnosed me.
When I got my trach, the docs said to start the process to get a power chair. I felt pretty good when they were scheduled to come out for the assessment and so I cancelled. I got a pneumonia a few weeks later and woke up and couldn't stand up or walk since my legs were so weak. So I started the chair process again and have had it for about six weeks. I don't use it every day; but on the days I do need I really need it and I'm super glad I have it. So like they say about insurance: "it's better to have it and not need it than it is to need it and not have it"
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