Having issues walking?

XxBlaqkxX

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Lately, I've been having a stressful time in life and it seems my health isn't being too nice to me.

For a while, 15 months, I was off of the keppra generic, levetiracetam, that I was taking. I felt great, not so tired, was no longer able to fall asleep without a seizure. All was well until I got COVID in December 2020. Since then, I've been struggling again. I'm enduring the millennium wait to see the neurologist, which is always fun...

Like, I felt like garbage after Halloween. We had this stay at home party with the kids (which was a lot of fun). We usually don't do a ton of sugar. We usually do stevia sweetened stuff and things of that nature or fruits to cure the sweet tooth, but we did get a few extra treats that we normally don't that seemed pretty okay. The kid's seem fine, but I indulged a little bit and I felt horrible. No energy whatsoever, totally fatigued, and weak. My husband said my face look swollen, but I did find that there were wheat and almonds in some of the stuff, which I don't tolerate well anyway. I ate, took my supplements, had an electrolyte drink, but still felt super exhausted. My husband let me fall asleep at about 7 p.m. and I woke up at 9:30 p.m. since I wasn't feeling too awesome. Then, on Tuesday, I have still been flat out exhausted, fatigued (I've been battling fatigue for a while. I'm not sure if it's from going back on the keppra generic or what, but I feel like I have been hiking all day every day and it's difficult to wake up in the morning).

I am also having this tingling - pins and needles type feeling in my lower back. It feels terrible. It feels like something is rubbing up and down my lower spine. It was difficult to walk today. I had to run a few errands and I try so hard to hide it in public that my gait isn't that great. I can still fake it, but this isn't the first time lately that I have had issues with walking. I feel like my hips and legs aren't moving the way they should and it's hard to walk. Sometimes before a seizure, I lose the ability to walk and become uncoordinated. The lack of coordination I have lately is bothersome. Some days are better than others, but I'll be pouring laundry soap into a cup to dump into the washing machine dispenser. I have the intention there and have done this a million times, but keep missing it some how...like, it's weird. How on earth am I missing and spilling laundry soap everywhere?! Even times being uncoordinated or having an awkward gait, I don't always have a seizure after that - sometimes I'll feel okay in my mind or at times maybe a bit foggy, but then no seizure and these other weird symptoms. I should be able to do this in my sleep by now. I am so scared of MS and things like that right now...I'll make sure to bring it up with the neurologist so they can investigate it more, but I'm really scared of that (mostly scared of a spinal tap if they do think it could be MS or something...like deadly terrified of it)...

I wish things in life would get better....I'm not sure what to make out of the newer symptoms. Anyone had this happen to them?
 

Nakamova

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Doesn't sound fun. :( I hope you get some answers soon.

Have you asked your doc about the possibility that some of the symptoms are "long-haul" COVID side effects? The fatigue and the brain fog could definitely be. And some studies indicate that one in three COVID-19 survivors got a neurological or psychiatric diagnosis within six months of infection.
 

XxBlaqkxX

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Doesn't sound fun. :( I hope you get some answers soon.

Have you asked your doc about the possibility that some of the symptoms are "long-haul" COVID side effects? The fatigue and the brain fog could definitely be. And some studies indicate that one in three COVID-19 survivors got a neurological or psychiatric diagnosis within six months of infection.

I haven't yet, but I have an appointment within the next week or two so I think I'll just wait until then. I seem to be fine today, but the past couple days weren't great. I'm also having like a kidney pain so I don't know if that's related or not....but I haven't been all that hungry lately either and having a lot of food in my stomach just seems to hurt quite a bit so when I do eat, I try to keep it light for now.
 

Plasticmask

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Reads like you already have a handle on it. You have the plan laid out; now we wait to see what happens next. Oh and for the record, I have to use a cane, and am "not allowed" by orders of Doc AND Wife, to do any chores other than laundry and I can't use silverware nor real dishes any longer because I will injure myself or simply drop and smash them. Paper plates, plasticware, plastic cups that I'm not even "allowed" to carry to my desk from the kitchen. At home alone, it's Ensure or nothing. For the rest of my life. I truly feel your frustration. Truly.
Please do tell us when you know something, we don't want to worry about you.
 

XxBlaqkxX

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The issue has seemed to go away after my ear infection got better and my energy has come back a bit so perhaps it was all related to that or something. The neurologist wasn't too concerned about that at this point after she heard the word "ear infection."

They're more concerned about the epilepsy issue and thinking that could have been part of it, too.
 

Plasticmask

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Thank you for letting us know!! SO glad you're doing better! :)
 

Andrew

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I am also having this tingling - pins and needles type feeling in my lower back. It feels terrible.
Have you had your vitamin levels checked by your doctor?

See "Symptoms of vitamin B12 Deficiency" and "Symptoms of Folate Deficiency" at the following link:

Vitamin B12 or folate deficiency anaemia - Symptoms - NHS (www.nhs.uk)

Folate (Folic Acid) = vitamin B9 FOLIC ACID: Overview, Uses, Side Effects, Precautions, Interactions, Dosing and Reviews (webmd.com)

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONTENT**
folic acid could lead to reductions in the levels of phenobarbitone, primidone and phenytoin.
Concerns raised over policy to add folic acid to flour | Epilepsy Action

folic acid could lead to reductions in the levels of phenobarbitone, primidone and phenytoin.
Caution urged over folic acid | Epilepsy Action

Also see:

Folinic acid-responsive seizures and pyridoxine-dependent epilepsy are two treatable causes of neonatal epileptic encephalopathy.
Folinic acid-responsive seizures are identical to pyridoxine-dependent epilepsy - PubMed (nih.gov)

Folinic acid is a form of folic acid that does not require activation by dihydrofolate reductase to be useful to the body.
Folinic acid - Wikipedia
 

Andrew

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I am also having this tingling - pins and needles type feeling in my lower back. It feels terrible. It feels like something is rubbing up and down my lower spine

Have you had your vitamin levels checked by your doctor?

See "Symptoms of vitamin B12 Deficiency" and "Symptoms of Folate Deficiency" at the following link:

Vitamin B12 or folate deficiency anaemia - Symptoms - NHS (www.nhs.uk)

Folate (Folic Acid) = vitamin B9 FOLIC ACID: Overview, Uses, Side Effects, Precautions, Interactions, Dosing and Reviews (webmd.com)

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONTENT**
folic acid could lead to reductions in the levels of phenobarbitone, primidone and phenytoin.
Concerns raised over policy to add folic acid to flour | Epilepsy Action

folic acid could lead to reductions in the levels of phenobarbitone, primidone and phenytoin.
Caution urged over folic acid | Epilepsy Action

Also see:

Folinic acid-responsive seizures and pyridoxine-dependent epilepsy are two treatable causes of neonatal epileptic encephalopathy.
Folinic acid-responsive seizures are identical to pyridoxine-dependent epilepsy - PubMed (nih.gov)

Folinic acid is a form of folic acid that does not require activation by dihydrofolate reductase to be useful to the body.
Folinic acid - Wikipedia
 

XxBlaqkxX

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Andrew said:
Have you had your vitamin levels checked by your doctor?

Yes, I already know I have many super fun deficiencies. I take supplements for them as much as is required.

The times I've been on medication, I have taken folate as a precaution and as advised as many AED's love to sap vitamins, especially folate.

The back tingling problem hasn't bothered me since the 3rd or 4th dose of antibiotics that I took for an ear infection.
 
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