My mom can't walk, doctor's don't know why

Posted by ablack2008 @ablack2008, Jun 19 11:29am

I'm so scared for my mom. Something's wrong but nobody knows what. She's been admitted into the hospital. She has had weakness for a few months now.

Her weakness has progressed to spells where she gets this foggy-headed, dizziness, her whole body gives out and a massive headache. They did an EEG but it's normal.

Sunday, when I went to see her, she was fine. She had energy, she stood and moved around. An hour later, while sitting, she got this glazed over look and said she was dizzy. Then her body went weak and she had to lay down. Then the headache started. It lasted about 30 minutes. Then it all faded away and only the headache stayed, though lessened too. It took an hour or two for her strength to come back.

Monday, she was barely able stay awake and now she can't walk. She can stand, but weakly and has to sit back down. Her entire body shakes when she stands and she would fall if nobody was with her.

They've done multiple imaging tests and blood work that have all been normal. She talked to different doctors while in the hospital.

They did a test for orthostatic hypotension and it didn't show anything. They tested her BP laying down, sitting up, then standing. If anything it elevated a bit, but not enough to alarm the Dr. Her heart issues were controlled. She has diabetes, but that isn't related to this. The doctors are stumped. She's too weak, apparently, to go to intensive rehab. They want to send her to a nursing home/rehab. She's only 62. They've done multiple blood tests and haven't found anything.

But a person doesn't go from walking to practically bed bound within six months for no reason.

We feel hopeless.

I plan to take her to the Mayo clinic when she's discharged. She will most likely need to be in a wheelchair.

I just want her back to her normal self. It was just six months ago that she was up walking around, cleaning, going to the store, and playing with my son. Now, she can barely move.

My grandma had Addison's disease and her symptoms were very similar, but they tested mom's cortisol and it was normal. So the doctor's didn't go any further. Plus she doesn't have the hypotension.

Somebody please give me hope.

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@ablack2008

I have already spoken with them central appointment. They recommended a possible hospital to hospital transfer.

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that would be ideal. i know someone who did a hospital to hospital transfer. She didn’t need to wait to be discharged. Once the transfer was arranged she was moved from the first hospital to another hospital that had extraordinarily talented specialists well prepared to diagnose and treat her.

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@elisabeth007

that would be ideal. i know someone who did a hospital to hospital transfer. She didn’t need to wait to be discharged. Once the transfer was arranged she was moved from the first hospital to another hospital that had extraordinarily talented specialists well prepared to diagnose and treat her.

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Note, the inter-hospital transfer was done by ambulance per the requirements of those hospitals.

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@elisabeth007

that would be ideal. i know someone who did a hospital to hospital transfer. She didn’t need to wait to be discharged. Once the transfer was arranged she was moved from the first hospital to another hospital that had extraordinarily talented specialists well prepared to diagnose and treat her.

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I asked her doctor but he said that Mayo hospital has a waiting list.

She's going to a rehab facility until I can get her the appointment at Mayo for the outpatient. I pray they can help her.

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@elisabeth007

Perhaps you want to consider taking your mom to see a “movement disorder specialist”a
Thats a sub speciality of neurology found in academic teaching hospitals and other large progressive medical institutions. Movement disorders run in my family. It took many years to diagnose my father’s movement disorder which turned out to be a non tremor/non-dementia form of parkinson’s. Wishing you and your mom all the best

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@elisabeth007
Good suggestion. After my EMGs by my neurologist, they are sending me to the neuromuscular specialist to assess the cause of my weakness which is impacting my standing and walking plus lifting.

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@ablack2008

I asked her doctor but he said that Mayo hospital has a waiting list.

She's going to a rehab facility until I can get her the appointment at Mayo for the outpatient. I pray they can help her.

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@ablack2008
Yes, at least in Rochester I know the hospital is often what they call yellow / red status which means they are close to capacity and limit transfers from other hospitals. There are only so many beds and staff.

Have you started the process to request an appointment.
You have two options:
- have your provider refer her to Mayo
- you can self refer to request an appointment for your mom

The place to start is:
https://www.mayoclinic.org/appointments

Which Mayo location are you considering?

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@roch

@ablack2008

Welcome to Mayo Connect, though participation cannot diagnosis your mother condition, we can support and give advice.

Not sure where you located, but a 2nd option is definitely a good idea.

For an appointment at Mayo for 2nd option, your current provider can refer your mother or you can self-refer.

If you would like to refer yourself, start with filling out the intake form or calling the Mayo Clinic location of your preference. Both can be found here: http://mayocl.in/1mtmR63

Hope you find an answer for your mother situation.

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Hi Laurie,
Does it make a difference (to Medicare) whether I self-refer or have my Dr refer me to Mayo Clinic?

Thank you.
Mary

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@msgolfnut

Hi Laurie,
Does it make a difference (to Medicare) whether I self-refer or have my Dr refer me to Mayo Clinic?

Thank you.
Mary

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@msgolfnut

It may depend on type of Medicare insurance and location. Medicare coverage can be confusing, there are so many types of Medicare plans.

Few facts on Medicare and Mayo. Each Mayo locations has different policies on insurance they take. So Rochester, AZ and FL differ on if accept original Medicare or Medicare Advantage policies, so you need to check with location your considering and your mom's insurance policy.

Mayo's page on insurance has more info but does not provide enough detail to answer your questions, it is vague on on what each location will accept:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance

I am not as familiar about referrals and insurance. If the Mayo location does not take your mom's insurance (you're not in network) sometimes the insurance company make exceptions if provider refers the patient to a specialist that the in-network clinic can not provide.

When you call to make an appointment at Mayo, they will ask about insurance and advice you. If the location does not take your mom's insurance, you can ask if provider does the referral if makes difference.

If your mom has a Medicare Advantage plan, you can call the insurance company ask those questions.

How are you doing being caretaker and having to handle all this?
I was primary person when my mom was sick, and it takes a toll. Make sure your taking care of yourself.

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@dlydailyhope

@ablack2008
I hope you can get answers for your mom soon. It is scary. I am a 54 soon to be 55 year old woman going through perimenopause/menopause with a 15 year old son (single parent). Over the last 8 years, I have gradually gotten worse but especially the last 6-9 months. I also have weakness, dizziness, brain fog, headaches, fatigue, difficulty walking/standing and cannot sit for too long due to pain. I am no longer able to work now and applying for disability hoping to be approved. This has all made me very depressed. What you describe about your mom’s symptoms all sounds neurological and issues with her central nervous system communicating to her peripheral nervous system which is affecting sensory and motor nerves. I have peripheral and small fiber neuropathy and currently going for updated EMGs of upper and lower limbs to check communication of peripheral nerves to my muscles. Has your mom had this testing done? Have they ruled out seizures and mini-strokes? Have they checked for cervical spine compression/flattening of spinal cord which would affect everything below the level?

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Yes the neck of cervical spine compression can cause all those symptoms !
You’d be surprised but cervical spine disc narrowing can cause pain weakness numbness from the neck below. Also can mimic heart attack symptoms !
Let us know what they find out b/c many ppl go through symptoms like this & are often dismissed until somebody decides to do an MRI of the neck !

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@roch

@msgolfnut

It may depend on type of Medicare insurance and location. Medicare coverage can be confusing, there are so many types of Medicare plans.

Few facts on Medicare and Mayo. Each Mayo locations has different policies on insurance they take. So Rochester, AZ and FL differ on if accept original Medicare or Medicare Advantage policies, so you need to check with location your considering and your mom's insurance policy.

Mayo's page on insurance has more info but does not provide enough detail to answer your questions, it is vague on on what each location will accept:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance

I am not as familiar about referrals and insurance. If the Mayo location does not take your mom's insurance (you're not in network) sometimes the insurance company make exceptions if provider refers the patient to a specialist that the in-network clinic can not provide.

When you call to make an appointment at Mayo, they will ask about insurance and advice you. If the location does not take your mom's insurance, you can ask if provider does the referral if makes difference.

If your mom has a Medicare Advantage plan, you can call the insurance company ask those questions.

How are you doing being caretaker and having to handle all this?
I was primary person when my mom was sick, and it takes a toll. Make sure your taking care of yourself.

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You responded to someone else on the thread but I assume you were asking me.

It's been difficult. I'm trying to keep faith and being positive for her sake, but I cry every night, but crying helps me.

The doctor here thinks he's found the answer. Sleep apnea. Her carbon dioxide was very high.

We've suspected that she has had it for quite a while because she snores and is a bit overweight. But I'm not sure if sleep apnea can suddenly do all of this. Unless there's another part of it that we haven't found. But mom is going to a rehab today and they will give her oxygen each night and we can see if it helps. If not, the doctor wants her to come back.

Mom has never wanted to use a CPAP at night. That's like her worst nightmare. Now she has to if she wants to walk again, according to the doctor. So seeing her depressed and crying over this new development is hard. But there are alternatives to the CPAP if it does fix her. There's a device called inspire which is a mask-less device. So hopefully she can qualify for it. This also is our wakeup call to buckle down and lose weight.

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@ablack2008

You responded to someone else on the thread but I assume you were asking me.

It's been difficult. I'm trying to keep faith and being positive for her sake, but I cry every night, but crying helps me.

The doctor here thinks he's found the answer. Sleep apnea. Her carbon dioxide was very high.

We've suspected that she has had it for quite a while because she snores and is a bit overweight. But I'm not sure if sleep apnea can suddenly do all of this. Unless there's another part of it that we haven't found. But mom is going to a rehab today and they will give her oxygen each night and we can see if it helps. If not, the doctor wants her to come back.

Mom has never wanted to use a CPAP at night. That's like her worst nightmare. Now she has to if she wants to walk again, according to the doctor. So seeing her depressed and crying over this new development is hard. But there are alternatives to the CPAP if it does fix her. There's a device called inspire which is a mask-less device. So hopefully she can qualify for it. This also is our wakeup call to buckle down and lose weight.

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Look it can make her feel energetic once she gets oxygen! The hypoxia can cause heart attack or stroke. Plus, Cpaps have come a long long way.
You can use nasal pillows now, instead of a mask & it just forces your airway open if you stop breathing.
It’s so wide & soft, you don’t feel like anything is in your nose openings !
Plus hypertension goes away too often after use of Cpap at night!
But if they have not run a. MRI of the c-spine, see if the Doc can, b/c by her positional symptoms, being fine & then getting worse, that often happens when the nerve is compressed more, so lifting, pushing , carrying groceries or laundry can bend the neck & that would cause her to be fine & then get worse! That’s probably why docs were previously testing for orthostatic hypotension!
The reason I know, is b/c I’ve been there, and was shuffled around, until I saw on an MRI cord compression at C4-C5 and subsequent surgery to lift the disc off the cord relieved all the symptoms!

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