Random neurological symptoms, anyone have similar symptoms?

This has to be so very tough! I was referred to a neuroimmunologist at Univ. of Tx health specialty group. If you have a teaching hospital or university specialists, they may be of some help.
I wish you and your daughter the very best - and hopefully a quick diagnosis and recovery. Bless you, Karla

Have you tried Cleveland children’s hospital?
Kat

I just got back from Mayo yesterday....I got a out of network approval but i had to show numerous items that had to be sent to my insurance company from my doctor including all prior tests and meds i have taken.
Finally after 6 months of trying between my Doc and myself and reviews by insurance company they approved it.
That would be the route i would try.
We are going to a PPO plan in Oct so we have more freedom of doctors we can see.
Insurance can be a pain but sounds like you have the records to get approved.
Hope this Helps.

My usual caveat - I am NOT giving professional medical information and, hopefully, you will find a physician who will take your daughter's symptoms with the attention they deserve. Having said that, one thing to note - neurological symptoms don't necessarily mean something in the brain or spine caused the symptoms, per se. And, no, I'm not suggesting the symptoms are psychological. One thing which can cause the symptoms is vitamin b12 deficiency. I cannot tell you what to do but I would certain pursue that... B12 deficiency can cause a host of central and peripheral nervous system problems which can vary widely. Sometimes MS is suspected which is one reason the scans are used to check.. Thankfully, your daughter's tests helped rule MS out. But they do not rule out B12 deficiency. Unfortunately, finding and treating B12 deficiency is not as easy as it sounds. Yes, there are simple blood tests which may pick up the deficiency but not always - elevated B12 in the blood may not mean you have adequate B12 and, unfortunately, busy doctors see a normal B12 level and then ignore the B!2 deficiency symptoms . (Normal levels of vitamin B12 in blood can occur due to a problem called functional vitamin B12 deficiency, meaning there's a problem with proteins that help move vitamin B12 between cells. Some genetic factors, especially Irish heritage, can play a role in this, but not always.) B12 deficiency can cause, over time, a host of neurological symptoms. Just popping a B12 vitamin may not be the solution even if B12 lack is the problem -- B12 shots work most quickly and, next to that, highly absorpable forms of the vitamin usually taken under the tongue (for many months). The best type is methylcobalamin because it is the active enzyme form of B12 and helps with absorption. I hope you can find a doctor to check this possibility out.

I'd look into Lyme, co-infections or mold.

As the mother of a doctor (trauma ortho) this is something we discussed when his dad became ill. It is horrible medical treatment (his words) when a patient is dismissed with no answers. I would suggest getting to a university hospital if possible. Do not accept being told you need a different specialist with out them facilitating getting you an appointment asap. A Dr requesting an appointment usually gets you in as soon as possible Keep pushing as hard as you can your daughter is a
Person not a collection of symptoms. MRI and Web being clear is good but certainly blood tests need to be done as many thing can show up or be eliminated. Sorry for ranting but this makes my blood boil. God bless and prayers are with you.

Have genetic testing done.
May help it could be an answer.
So sorry u are going through this.

Hi, yes, @lynmal725
I have had many random neuro symptoms that hit hard in the fall of 2020. I've become a patient advocate since this journey started.
The neurologist is not wrong that the cause could be an ENT issue BUT There is a chance there is a genetic component to her symptoms. The 2 things I would recommend doing are to:

1. Ask an ENT to test her Vestibular System with a VHIT & a VNG test and request a hearing test as well. In fact don't ask Tell them what you want. Caloric testing is helpful.

2. If I were you I would also ask either the ENT or a neurologist to run a "Full Comprehensive Ataxia Panel" genetic lab test. There are many new types of ataxia that encompass symptoms like this and more types of ataxia are being discovered as I type this. Not all ataxia types share the same symptoms, I know this firsthand unfortunately. There is an ataxia that has an RFC1 gene mutation with similar symptoms this it is called RFC1-CANVAS Spectrum Disorder.

3. While I don't know your daughters age it is possible she has a parathyroid issue, this can happen at any age and can Also can be genetic (born with it). Genetic testing can help determine this too. Some gene mutations associated are MEN1, MEN2, & more...tell them you want this testing too. I say this because parathyroid issues CAN cause neurological symptoms. Don't let them tell you no, push back & be your own best advocate.

I am not a medical professional just a professional patient advocate that has learned A LOT from my experiences and aim to help others on their quest to find a dx. My best to you.

PS. Vestibular.org has lots of helpful info along with ataxia.org

P.S.S. Just because a brain MRI did not present with any abnormalities does not mean there is nothing going on in the brain. Movement disorders do not always have atrophy of say the cerebellum or the pons.

I , along with most others on here, believe you need to get to a different location and find a different doctor. If you need to go to the ER....go to a different one. As an example, I have Myelomalacia, which presents in an MRI, (mine is cervical) it was found by accident on a different MRI and it is a progressive disease, with a host of things it can mess with such as neck pain, back pain, numbness in different limbs, falling down, breathing, etc.....because it is a spine issue and your spine runs your body.
My opinion, is you doctor hop until you find a compassionate one that will listen and get to the bottom of it.

I had some similar symptoms pre &/or post craniotomy for a grade 1 meningioma in my right temporal lobe. Maybe need MRI and different neurologist or neurosurgeon.