1. < Autoimmune Diseases

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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kayabbott | @kayabbott | Jul 25 7:37am
In reply to @ablack2008 "Update: my mom got out of the hospital a couple of weeks ago and is doing..." + (show)
@ablack2008

Update: my mom got out of the hospital a couple of weeks ago and is doing much better in terms of weakness. She does home health physical therapy and improves each day.

She is still dealing with moments of severe vertigo attacks that make her feel very weak. The attacks last 30 minutes to an hour. Then she gets very sleepy and has to "sleep it off". Once the episodes are over, she's fine again. We don't know when they hit. Because of these, she uses a walker. She could be walking in the kitchen perfectly fine, then Bam! The room starts spinning, she has to sit so she doesn't fall. Then for about an hour she is weak and needs to lie down to sleep. She's scared to go anywhere.

The doctors still aren't sure what's going on. They've said it might be meniere's disease. Does it cause attacks like this? Randomly?

Jump to this post

A sibling has Meniere's. It is kicked off by dairy and stress in her case. When it hits she gets extreme vertigo and goes down. It is likely that she is also sensitive to gluten (I have celiac, which is genetic), but she won't get tested. They do sound a bit like seizures as well; after a seizure one is foggy for a while and then quite sleepy. It would be good to keep a food log in case any food/stress/etc are triggers. If it is multiple causes then diagnosis takes a bit more time.

REPLY
frobvt | @frobvt | Jul 25 8:02am

I'm really sorry that your mom has had all these troubles, and they're not able to pinpoint as to why?

In reading through all the posts, it seems as though folks are being very thoughtful and helpful.

Vestibular migraines can really be something awful, and also can cause severe vertigo with weakness and some of the symptoms you have described. I know and I'm getting one because I get off-balance and dizzy. And to make matters worse, sometimes these can last a couple or more days! Does your mom have a history of migraines? That's an important point for her to bring up to the doctor. I didn't start getting vestibular migraines until a couple years ago.

I've had them since I was about 6 years old and I'm 72. I can say they have changed throughout my lifetime. And occasionally, I do get the vestibular migraines, which in my case, are directly related to barometric pressure changes. I couldn't get a link from the Cleveland Clinic about vestibular migraines to put here, but please check it out.

I use special earplugs (that have baffles in them, which help to reduce the barometric pressure and equalize it, when I feel a migraine might ensue. Please go to weatherx.com, because there's plenty of information about them. Do the earplugs work? Yes, they help me most of the time to either eliminate, or reduce the severity of a migraine.

I hope that my post helps, and that your mom will experience some relief soon, and get some answers soon!

REPLY
1 reply
Mentor
Laurie, Volunteer Mentor | @roch | Jul 25 8:44am
In reply to @ablack2008 "Update: my mom got out of the hospital a couple of weeks ago and is doing..." + (show)
@ablack2008

Update: my mom got out of the hospital a couple of weeks ago and is doing much better in terms of weakness. She does home health physical therapy and improves each day.

She is still dealing with moments of severe vertigo attacks that make her feel very weak. The attacks last 30 minutes to an hour. Then she gets very sleepy and has to "sleep it off". Once the episodes are over, she's fine again. We don't know when they hit. Because of these, she uses a walker. She could be walking in the kitchen perfectly fine, then Bam! The room starts spinning, she has to sit so she doesn't fall. Then for about an hour she is weak and needs to lie down to sleep. She's scared to go anywhere.

The doctors still aren't sure what's going on. They've said it might be meniere's disease. Does it cause attacks like this? Randomly?

Jump to this post

@ablack2008

Hypoglycemia is a condition in which your blood sugar (glucose) level is lower than the standard range. It has some of the same similar symptoms. I occasionally have an attack, dizzy, sweating, etc... When lay down, fall asleep and when wake up I am better. Now when feel it coming on I use simple kit to test blood sugar and if low take candy or juice. I am not diabetic.

For more information, see:
https://www.mayoclinic.org/diseases-conditions/hypoglycemia/symptoms-causes/syc-20373685
Has anyone suggested testing her blood sugar when she has an attack?

REPLY
1 reply
ablack2008 | @ablack2008 | Jul 25 10:17am
In reply to @frobvt "I'm really sorry that your mom has had all these troubles, and they're not able to..." + (show)
@frobvt

I'm really sorry that your mom has had all these troubles, and they're not able to pinpoint as to why?

In reading through all the posts, it seems as though folks are being very thoughtful and helpful.

Vestibular migraines can really be something awful, and also can cause severe vertigo with weakness and some of the symptoms you have described. I know and I'm getting one because I get off-balance and dizzy. And to make matters worse, sometimes these can last a couple or more days! Does your mom have a history of migraines? That's an important point for her to bring up to the doctor. I didn't start getting vestibular migraines until a couple years ago.

I've had them since I was about 6 years old and I'm 72. I can say they have changed throughout my lifetime. And occasionally, I do get the vestibular migraines, which in my case, are directly related to barometric pressure changes. I couldn't get a link from the Cleveland Clinic about vestibular migraines to put here, but please check it out.

I use special earplugs (that have baffles in them, which help to reduce the barometric pressure and equalize it, when I feel a migraine might ensue. Please go to weatherx.com, because there's plenty of information about them. Do the earplugs work? Yes, they help me most of the time to either eliminate, or reduce the severity of a migraine.

I hope that my post helps, and that your mom will experience some relief soon, and get some answers soon!

Jump to this post

She's never really had migraines. But things can change.

REPLY
ablack2008 | @ablack2008 | Jul 25 10:18am
In reply to @roch "@ablack2008 Hypoglycemia is a condition in which your blood sugar (glucose) level is lower than the..." + (show)
@roch

@ablack2008

Hypoglycemia is a condition in which your blood sugar (glucose) level is lower than the standard range. It has some of the same similar symptoms. I occasionally have an attack, dizzy, sweating, etc... When lay down, fall asleep and when wake up I am better. Now when feel it coming on I use simple kit to test blood sugar and if low take candy or juice. I am not diabetic.

For more information, see:
https://www.mayoclinic.org/diseases-conditions/hypoglycemia/symptoms-causes/syc-20373685
Has anyone suggested testing her blood sugar when she has an attack?

Jump to this post

She's had hypoglycemia often. These are different symptoms.

REPLY
1 reply
frobvt | @frobvt | Jul 25 1:35pm
In reply to @ablack2008 "She's had hypoglycemia often. These are different symptoms." + (show)
@ablack2008

She's had hypoglycemia often. These are different symptoms.

Jump to this post

Yes, of course things can change, and true, hypoglycemia is different.

REPLY
reets70 | @reets70 | Jul 26 5:34am
In reply to @larry68 "Earlier this year i was in hospital for 4 days where tgey ran all kinds of..." + (show)
@larry68

Earlier this year i was in hospital for 4 days where tgey ran all kinds of test because i could not walk,talk or write.Seen 2 different neurologist and was told i would never walk unassisted again.Was sitting home googling all my drugs and found the one drug that its side effects matched my problem.I quit taking it and was walking,talking and writing 3 days later.Check your drugs carefully.Amiodarone was mine.Never again for me.

Jump to this post

Amiodorone was my husband’s too. He’s almost normal again since he’s off the drug!

REPLY
lkirnbauer | @lkirnbauer | Jul 26 8:36am

First of all, I’m so sorry for you and your Mom for what she’s going through. Do you know if she had her Thyroid levels checked? I’m asking because I have Hashimoto’s and Hypothyroidism and my symptoms were great fatigue and brain fog. I have been taking Synthroid and staying off gluten, dairy and soy products. Feeling much better doing this. To have your Thyroid levels checked you have to have a blood test by a doctor, it’s pretty simple. You just need a doctor to prescribe an Order to have the bloodwork done. I wish you and your Mom all the best on your health journey.

REPLY
kerriihart | @kerriihart | Aug 28 9:19pm

Did she recently get a Covid vaccine?

REPLY
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