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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I would be interested to know if your mom has any numbness in her toes, feet, legs. Her symptoms are quite similar to mine and it took over a decade for me to get diagnosed. I sure don’t want anyone else to go through that! I have CIDP, an autoimmune form of peripheral neuropathy that causes the signal from nerve to muscle blocked. It’s a clinical diagnosis (based on history and physical exam) as there’s no definitive test that confirms it. It is diagnosed by a neurologist and is treatable to lessen symptoms and prevent progression. An EMG helps but is not definitive. The sooner it’s diagnosed the less damage to the nerves. It causes balance problems, dizziness, numbness in extremities, muscle weakness that causes inability to walk or get out of chair. It’s considered rare so not thought of readily by physicians and many Drs have never heard of it. It is also characterized by good and bad periods of time, days or hours. I would learn about it and see if it fits. A neurologist is your best bet and I so hope she gets proper diagnosis and treatment soon! You’re doing a great job of advocating and helping her!

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@ablack2008

Thank you! She knows she needs to work through this.

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A professional who deals with such issues may be able to make the resolution much more manageable. just a suggestion

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I also just found out she has diastolic heart failure. Apparently this can also cause her symptoms. I am going to talk to the Cleveland clinic as well as Mayo to see which place would be best.

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I was diagnosed recently with Hashimoto’s and Hypothyroidism. I too was weak, tired and had not much energy. I had my Thyroid levels checked by a blood test and to the doctor’s surprise, mine were off the charts! Ask your doctor to have your Mom’s TSH, T3-Free, T4-Free, Thyroid Antibodies tested. It’s a simple blood test. I sure hope your Mom gets better, she’s too young for this to be happening to her. I’m sorry she’s suffering, good luck to you and your Mom.

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Ok. We are so confused. She's been in rehab for about 4 days, she's gotten her strength back, she's walking with a walker, and they think that she will be able to walk without one by the time she leaves. This morning at about 10:00 during physical therapy, she had a spell. She got dizzy, headache, all over body weakness, and now she's seeing double during this spell. When I say weakness, I mean like her body gives out. They couldn't continue the therapy and had to bring her to her room. She promptly fell asleep after. Now she's still feeling weak, an hour later. We just don't understand what these spells are. They did an EEG in the hospital to test for seizures, and while it didn't show seizures, it did show something. But the doctor couldn't figure out what that something was, but he never followed up with it. She has not had one of these episodes until today since leaving the hospital. What the heck is going on?

This isn't sleep apnea, or her heart. These are just quick spells that happen. That doesn't sound like a heart issue. It sounds like a neurological issue.

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@ablack2008,
At this point everyone is trying to help by giving possible reasons for her symptoms and they are worth considering. But you are correct in seeking a complete evaluation. The spell she just had could be anything from heart, neuro, sugar levels. It is impossible to tell. Nothing in body works independent, when one thing is not working, it can lead to other problems and symptoms. It is identifying the primary or co-conditions that is difficult. That is why she needs a clinic that does a comprehensive evaluation.

Mayo and Cleveland Clinic are both excellent options.

Have her providers been willing to do referrals, or are you doing self-referral?

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@roch

@ablack2008,
At this point everyone is trying to help by giving possible reasons for her symptoms and they are worth considering. But you are correct in seeking a complete evaluation. The spell she just had could be anything from heart, neuro, sugar levels. It is impossible to tell. Nothing in body works independent, when one thing is not working, it can lead to other problems and symptoms. It is identifying the primary or co-conditions that is difficult. That is why she needs a clinic that does a comprehensive evaluation.

Mayo and Cleveland Clinic are both excellent options.

Have her providers been willing to do referrals, or are you doing self-referral?

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Right now it's self.

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@ablack2008

Right now it's self.

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I agree. A clinic that can and will do a thorough neuro exam is a must.
They need t follow up on the "something" and find out what it is. It could be so many things. A referral would be a great idea, but I wouldn't wait too long for it. Proceed anyway. Your Mom sound like a very active person. Too young to be sidelined into the "OFD- Old, Fat, and Diabetic box." Once put in that box it's extremely hard to get a Dr. to pay any attention to your symptoms. And of course that depends on the Dr. At any rate continue to advocate for her, You are doing a great job. And I know it is a hard job!

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@farmgrrl57

I agree. A clinic that can and will do a thorough neuro exam is a must.
They need t follow up on the "something" and find out what it is. It could be so many things. A referral would be a great idea, but I wouldn't wait too long for it. Proceed anyway. Your Mom sound like a very active person. Too young to be sidelined into the "OFD- Old, Fat, and Diabetic box." Once put in that box it's extremely hard to get a Dr. to pay any attention to your symptoms. And of course that depends on the Dr. At any rate continue to advocate for her, You are doing a great job. And I know it is a hard job!

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We plan to have a highly rated local neurologist look at her for now while we get her heart figured out at Cleveland. If they can't figure it out or they don't find anything neurological, we will be going to the Mayo clinic. I do feel more hopeful because she is walking. And she was weak for only an hour after her spell, whatever it was. She was able to go back to physical therapy about two hours later.

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@ablack2008

We plan to have a highly rated local neurologist look at her for now while we get her heart figured out at Cleveland. If they can't figure it out or they don't find anything neurological, we will be going to the Mayo clinic. I do feel more hopeful because she is walking. And she was weak for only an hour after her spell, whatever it was. She was able to go back to physical therapy about two hours later.

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That's good news and a great plan.

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