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

@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.

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.

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!

So sorry to hear about your mom.

Seems kind of like seizures with cumulative damage to the CNS. That would not necessarily show up, even on MRI's. Autoimmune cause is possible, the most likely culprits being Sjogren's Syndrome, Lupus and, as one poster indicated, Celiac Disease. Sarcoid too? And, yes, Addison's is a possibility. It can cause neurological symptoms, and although the age of onset is usually earlier, it can occur at any age, and a family history of autoimmunity may be relevant here.

For the sake of completion, check if she's gotten an paraneoplastic panel. She should also be tested for any infectious etiology--some viruses can mess with the nervous system. Also, vitamin deficiencies, especially B12, although her symptoms don't suggest that. Even so, cover all bases.

I'm reviewing here the work-up I got when I was hospitalized earlier this year. My symptoms did not resemble hers, but they were neurologic, and I do have an autoimmune disease, which could be the basis of her problem. Great idea to have her evaluated at the Mayo Clinic, or some other top-notch academic medical institution.

I hope you can get some answers soon. Not knowing is hell. Believe me, I know. Hang in there.

@ablack2008
I am a mentor and replies still mess me up, reply or am I replying to a reply ....

I hope your mom is willing to try CPAP, they have come along way and there are different type of mask. It will be uncomfortable at first but she will get use to it.

I have a friend who has inspire device. She had severe sleep apnea. She got approved prior to being on Medicare, but to get approved on her private insurance she had to have sleep tests that proved the CPAP machine did not improve her breathing enough.

Your being a great daughter, but remember, you can only help your mother if you take care of yourself.

We heard about the inspire. Mom has claustrophobia and fears the mask will make it worse. The inspire might be a good alternative, if Medicare approves it. She can also try a mouthpiece device. I am going to try and get her in to this office here that is highly rated. They treat sleep apnea and other issues.

You are awesome in your efforts to help your Mom. But in one post you said your Mom knows she needs the CPAP but is afraid. There are so many "maskless" options now, she NEEDS to try.
You can't help your Mom if she won't help herself.
We often see people on Connect who are reluctant or afraid - sometimes that issue needs to be addressed before healing can begin.
Since she is going to Rehab, maybe they can get a counselor, therapist or social worker involved who can help HER work through this.
Your Mom probably really wants to get well, but is afraid - rehab is a lot of work, and requires her to make changes in her life that will be hard or that she has resisted in the past.
Hang in there, we're here for you!

The doctor thinks it's sleep apnea. There was high carbon dioxide in her blood. She was sent to a rehab. If she gets better, then we know that's it. If she doesn't, the doctor will readmit her. He's a good doctor. He's doing everything he can think of. He even hugged mom this morning.