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

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.

REPLY

@ablack2008 I’m so sorry to hear this about your mother. It’s definitely a scary situation. As @roch said, we’re unable to diagnose your mother. I think going to a Mayo Clinic is a great idea. There are 3 of them:Rochester,MN; Jacksonville, FL; and Phoenix,AZ. When you apply, in a sense, you're applying to all 3. Follow @roch’s directions to start the process. It also helps if you can get her doctors to call or send copies of her records to Mayo ahead of time. The. Mayo Clinic network is another option.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members These hospitals have full access to Mayo Clinic’s knowledge and expertise.
If your mother get’s an appointment at Mayo Clinic or a network hospital, is there someone who can go with her?

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@becsbuddy

@ablack2008 I’m so sorry to hear this about your mother. It’s definitely a scary situation. As @roch said, we’re unable to diagnose your mother. I think going to a Mayo Clinic is a great idea. There are 3 of them:Rochester,MN; Jacksonville, FL; and Phoenix,AZ. When you apply, in a sense, you're applying to all 3. Follow @roch’s directions to start the process. It also helps if you can get her doctors to call or send copies of her records to Mayo ahead of time. The. Mayo Clinic network is another option.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members These hospitals have full access to Mayo Clinic’s knowledge and expertise.
If your mother get’s an appointment at Mayo Clinic or a network hospital, is there someone who can go with her?

Jump to this post

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

REPLY

When I got sick it was also very mysterious, I understand a little bit about how you feel. Keep advocating and researching her symptoms online. Also, keep an eye the basics during this time - make sure she’s hydrated, get her up and around for a walk on good days, make sure she’s getting healthy food and rest. The same goes for you - especially since you have a little one too. Your schedule can go out the window with medical visits and whatnot and that just makes everything worse. Until you know otherwise, assume that this is just a bump in the road and that she will be fine. She’s only 62 - that’s relatively young! At her age there are lots of changes to several body systems due to menopause winding down - it could turn out to be something simple. I hope you have good luck in having her seen by another facility. Hang in there and try not to focus on the scary what-ifs.

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@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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Another option from Mayo Clinic would be the Cleveland Clinic's National Consulting Service. You can goggle Cleveland Clinic National Consulting Service and then decide if you want to consider that Plan B. I went that route during the pandemic because they were willing to consider telehealth appointments and my local doctors were teed up to order any test that they wanted run. It was longer than the normal one-two week diagnosis cycle but it worked based on the situation. I wish you success on your journey, whatever route it takes. Most of all I hope your Mom is successful in regaining what she has lost and returns to be an active part of her family.

BTW, I still have telehealth consulting meetings with my lead doctor at Cleveland Clinic and that was almost 4 years ago. He follows me on my journey. I totally appreciate his willingness to remain involved.

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I am so sorry to hear of your mother's condition! I do not know if this could be relevant but I suffered for twelve years with bouts of leg paralysis, ataxia, sudden spurts of joint pain. Doctors tested me over and over for Lyme, MS, Lupus, etc. (all normal for years!) I was finally tested for gluten (simple blood test and in my case followed by an endoscopy) and found that I have Celiac Disease. My specialist doctors are shocked that this has caused these symptoms. Symptoms of Celiac can be sporadic, severe, debilitating and often come on without any digestive issues and can pop up at any point in life. There are over 200 symptoms unrelated to digestive problems and it often goes misdiagnosed. They also tend to pair with other autoimmune conditions, such as diabetes and thyroid Hashimotos etc. None of my specialists in neurology, rheumatology, endocrinology, etc had ever tested me for gluten... I only happened to be tested by a routine hospitalist who knew of this possibility. This is certainly not the reason for everyone having severe, unexplained neurological symptoms... But something to be aware of as your mother continues to be seen. I hope she finds comfort and healing very soon!

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@becsbuddy

@ablack2008 I’m so sorry to hear this about your mother. It’s definitely a scary situation. As @roch said, we’re unable to diagnose your mother. I think going to a Mayo Clinic is a great idea. There are 3 of them:Rochester,MN; Jacksonville, FL; and Phoenix,AZ. When you apply, in a sense, you're applying to all 3. Follow @roch’s directions to start the process. It also helps if you can get her doctors to call or send copies of her records to Mayo ahead of time. The. Mayo Clinic network is another option.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members These hospitals have full access to Mayo Clinic’s knowledge and expertise.
If your mother get’s an appointment at Mayo Clinic or a network hospital, is there someone who can go with her?

Jump to this post

I would

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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?

Jump to this post

They've done everything except the emg. Everything came back normal.

REPLY
@astanko

When I got sick it was also very mysterious, I understand a little bit about how you feel. Keep advocating and researching her symptoms online. Also, keep an eye the basics during this time - make sure she’s hydrated, get her up and around for a walk on good days, make sure she’s getting healthy food and rest. The same goes for you - especially since you have a little one too. Your schedule can go out the window with medical visits and whatnot and that just makes everything worse. Until you know otherwise, assume that this is just a bump in the road and that she will be fine. She’s only 62 - that’s relatively young! At her age there are lots of changes to several body systems due to menopause winding down - it could turn out to be something simple. I hope you have good luck in having her seen by another facility. Hang in there and try not to focus on the scary what-ifs.

Jump to this post

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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