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  • Mom ALS/PLS diagnosis HELP!

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    Old 06-06-2019, 02:33 PM   #1
    ksc1968
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    Mom ALS/PLS diagnosis HELP!

    My mom has been having symptoms since December 2018. Symptoms started with her neck, speech and tongue issues. She had a emg and ncs in February that were normal so she thought she was clear of ALS. Symptoms are progressing and its hard for her to eat, etc. She has had a ton of tests ...normal MRI of brain and spine, muscle biopsy that showed muscle damage (statins), genetic tests for diseases, lots of specific blood tests, etc.
    Today was a repeat of the EMG and NCS. The NCS was normal. The EMG showed muscle damage in her neck and in tongue and in her upper spine (4 areas total)
    The neurologist did the test himself this time and we got the results after.
    He was very wishy washy and said it looks ALS-like but she only had 4 out of the 10 muscle areas he can't be positive its ALS. It could be PLS he said.
    When I questioned if he was positive it was ALS or PLS he said no. He said normally the legs and arms show damage but hers didnt. Its just the central area in her head and neck. Her neck is so bad its called head drop. She can't hold it up at all and requires a brace. This was her first symptom.
    My question is, the other blood tests showed a muscle disease that is usually in people by age 20-30. My mom is 78. He just blew it off since she was too old.
    He said the biopsy showed mitochondrial issues and muscle damage from statins.
    My moms dr stopped all statins and steroids in March as they can cause myopothy. She was diagnosed with myopothy in February after the first normal EMG NCS studies. We requested a second opinion at Kaiser and she had the head of neurology do the tests today and said what I mentioned above.
    This dr seems to have given up on her. He isn't sure she has ALS/PLS but is doing nothing else for her. Any one have any ideas? We just want a diagnosis, either way. Its so hard living in limbo but to make a ALS diagnosis shouldn't they be reasonably sure of what it is? Shouldn't they run out all other possibilities first?

     
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    Old 06-07-2019, 08:26 AM   #2
    yayagirl
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    Re: Mom ALS/PLS diagnosis HELP!

    Dear ksc,

    When there are complications, Kaiser is notorious amongst all of the people that I know, for not doing what is needed in order to give clear answers. Is anyone there with your mother at the doctor appointments? I believe that most doctors these days are sadly too young and inexperienced to be dealing with old age problems. She may not have ALS, so other options need to be considered. I don't know is not an answer. Has a doctor said she had a stroke?

    The law requires insurance to cover getting opinion outside of the medical group. I would get a copy of all of her health records from just before this started to present and call the most local Mayo clinic for further research and treatment. They have world renown doctors and you can get the facts from them and expert care.

    Please let us know how mom and you are doing. Take care of yourself, too.
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    Old 06-07-2019, 10:01 AM   #3
    MSNik
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    Re: Mom ALS/PLS diagnosis HELP!

    I am really sorry you are going through this, but if the neuro isn't willing to give you a conclusive answer, then it means that he cant. He isn't doing this to torture you.

    You could look for an ALS specialist who might be able to tell you more; but until her symptoms change and tests are done again, you may be in "limbo land", which stinks. I am really sorry to hear your mom is going through all this.
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    Old 06-07-2019, 06:05 PM   #4
    ksc1968
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    Re: Mom ALS/PLS diagnosis HELP!

    Hi, She has not had a stroke since her Brain MRI was normal. We requested a referral to the mayo with her primary care Dr and she called my mom today and said that they have to be requested by the neurologist. She said they usually reject any mayo clinic requests.
    Her medicaid is owned by kaiser so she can't even use that if they reject her. I hope they dont reject her!!!

     
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    Old 06-07-2019, 11:33 PM   #5
    yayagirl
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    Re: Mom ALS/PLS diagnosis HELP!

    Dear ksc,

    That medical group may try to discourage patients from seeking outside opinion, but they do not own her, and she very well may have legal recourse. I may be wrong but it seems that by law insurance has to pay for opinion outside one's medical group, even Kaiser. I know of people with Kaiser who did get seen by Mayo that way.

    Don't argue or make threats just take action. If you can, get power of attorney to act on her behalf. Then get a copy of all of her medical reports. She is entitled to those by law. Then you can contact Mayo yourself, here -

    https://www.mayoclinic.org/forms/us-resident-appointment
    The Mayo clinic will give you definite information on what can be done. There also may be charities that will help folks in your mom's position.

    If you get anywhere with this please let us know. Don't give up.
    Hugs and prayers,
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    Old 08-31-2019, 08:03 AM   #6
    oldman1952
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    Lightbulb Re: Mom ALS/PLS diagnosis HELP!

    Hi KLC, one thing I can see here is that ALS can take so long to develop into something that can cause problems that can effect the persons quality of life. Doctors do have diagnostic differentials between at least 6 different diseases or more before a correct diagnosis is made. ALS is similar to FTLD and NMD. Plus young doctors now review masses of new documents and papers from all the best physicians in the world. They also have to write their own papers and thesis on new ways of diagnosing some of the older illnesses and diseases. This is before they go on to become professionals in their chosen fields. I say listen to them, get them on your side after all they have to work to the Hierocratic oath. Best regards Oldman.

     
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