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Daughter Unable To Walk Again


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My daughter has been walking fairly well since her release from the hospital last month. She does fall probably once a day but in between does ok. This morning she stood up out of bed and fell to the floor and has been unable to stand on her own. She is crawling to get around the house and doesn't want to go the the ER as last time this happened they hospitalized her and didn't figure out anything. It just got better on it's own after 3 days. MRI of the head and back show nothing. x-rays of the hips , legs and knees show nothing. With the exception of elevated CPK all labs were pretty good. I don't know where to go from here or even what other tests should be asked for. The neuro doc she saw in the hospital said she has a history of anxiety disorder and I think he blames all of her symptoms on that. The cardiologist thinks it's the POTS but she isn't blacking out or even feeling faint.

Randi

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She is having shooting pain in the fronts of her thighs and says it feels like overwhelming muscle weakness. No lightheadedness or worsening of POTS symptoms. I'm beginning to wonder if the POTS and now this are both symptoms of some underlying illness. I'm doing all this looking on the internet and I keep coming acrss stuff where some of the symptoms fit but then I hit a roadblock because she isn't having the most common symptoms. Has anyone here hears of Friedreich's ataxia? She went on vacation to Virgina months before this all started and I'm wondering if it could be Lymes disease. I know I'm really reaching but these two things just don't seem related.

Randi

What is she feeling when she tries to stand up? Is she getting visual disturbances?

Or could it be joint pain if she has hypermobile joints, like lots of POTS patients do?

Get her to keep talking to you about what she feels is going on.

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"We" are sensitive to dehydration. I'm not saying it's that easy, but worth the simple effort it would take to address it.

Is she on norpace now? I used to crawl around alot too. I also had elevated CPK and low potassium.

Good luck........

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She drinks at least a gallon of water a day. This excessive thirst is something new in the last 6 months. She is on Norpace and is taking it as prescribed. she definetly notices a worsening of the leg pain and trembling when she misses a dose but this latest episode is after not missing any in at least a week.

"We" are sensitive to dehydration. I'm not saying it's that easy, but worth the simple effort it would take to address it.

Is she on norpace now? I used to crawl around alot too. I also had elevated CPK and low potassium.

Good luck........

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Hi,

I wouldn't rule anything out until it has been ruled out by tests. That's my theory anyway. A simple blood test can rule out lymes disease.. i'd say go ahead and do it. I had that test run months ago as well.. What about MS? Sometimes MS can be a tricky thing to diagnose. Have they done a nerve study on her legs? I had that done bc my neuro thought I might have MS. They hook up small electodes to the limbs and test the nerve responses. It's not fun but not really painful. Maybe you should look into having some MS type tests run, just to rule it out. I'm so sorry to hear about her trouble. I hope that she feels better soon!

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I was told by the neuor doc that the negative brain and spinal MRI ruled out MS. Is this something that doesn't always show on MRI? I know that there was no mention of lesions or anything unusual that looked like demylenation because I received a copy of all of her scans and labs. My first thought when the legs started going was MS because a cousinn and her daughter have it and the way her legs look is familiar. She can't sit in a chair and raise either leg more than 2 inches off the ground and even that requires a major effort which leaves her trembling. I don't understand why the doctors aren't taking this seriously. I have great hopes that at her cardiology visit on Tuesday the doctor is going to be shocked enough at her deterioration to do something.

Randi

Hi,

I wouldn't rule anything out until it has been ruled out by tests. That's my theory anyway. A simple blood test can rule out lymes disease.. i'd say go ahead and do it. I had that test run months ago as well.. What about MS? Sometimes MS can be a tricky thing to diagnose. Have they done a nerve study on her legs? I had that done bc my neuro thought I might have MS. They hook up small electodes to the limbs and test the nerve responses. It's not fun but not really painful. Maybe you should look into having some MS type tests run, just to rule it out. I'm so sorry to hear about her trouble. I hope that she feels better soon!

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Hi,

Well I am not a doctor but my suggestion would be to at least request the nerve test. I'm sorry, I can't remember what the name of the test is, but they'll know what you're talking about. I was told, for me, that sometimes MS is VERY difficult to diagnose, especially in the early stages. My neuro described it as a "boxing match", you have to go several rounds sometimes before you figure anything out. I had normal spine and MRI's as well and still had the test. Has she had a spinal tap? Most neuros won't do those now bc they're so invasive (unless they have to).... keep your chin up! It's great she has someone fighting for her!

I was told by the neuor doc that the negative brain and spinal MRI ruled out MS. Is this something that doesn't always show on MRI? I know that there was no mention of lesions or anything unusual that looked like demylenation because I received a copy of all of her scans and labs. My first thought when the legs started going was MS because a cousinn and her daughter have it and the way her legs look is familiar. She can't sit in a chair and raise either leg more than 2 inches off the ground and even that requires a major effort which leaves her trembling. I don't understand why the doctors aren't taking this seriously. I have great hopes that at her cardiology visit on Tuesday the doctor is going to be shocked enough at her deterioration to do something.

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I hate it when "anxiety" is the conclusion that is jumped to just because the doctor doesnt have an explanation. My husband has been in and out of the hospital for a month now with PE's and DVT's and trying to get his blood regulated. Everytime he is in extreme pain they say "He is very anxious". Well if you had blood clots in your lungs and were in extreme pain and your bp bottomed out in the ER..............you would be anxious too. Sorry to vent just tired of haering "anxiety". so keep fighting the fight and dont give up. I am the advocate for my husband and it helps having someone else besides the patient saying NO.

mary

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Kind of a side note...you said she drinks a gallon of water a day. I was told, with POTS, not to drink water. Instead, I drink propel (Gatorade's flavored water with electrolytes, sodium, and such) and similar things. I don't know if this would make any difference with the thirst, but it might be worth trying to relieve one tiny symptom.

Meg

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When you describe shooting pains, and weakness, it just sounds so "neurological" in nature...be it MS, or Lyme's attacking the nerves, or even a problem with her back, a good neuro or good rheumy should be able to help. Easier said than done though, I know. :(

Hang in there and keep advocating for her. Perhaps when the anxiety issue is brought up again, if your daughter could firmly say "you'd be depressed and anxious too if you were unable to walk and no one could figure out why!?"

Nina

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  • 5 years later...

Hi Randi,

I know this is an old post but I was wondering if you found out what the final diagnosis was for your daughter. My son has symptoms that are very similar to your daughters.

Rachel

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