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Has anyone experienced any other type of neurological symptoms such as neuropathy, headaches,unsteady balance and gait.

A MyLupusTeam Member asked a question 💭
Elkridge, MD

Went to ER at local hospital diagnosed Ataxia. Possible stroke. All tests results came back negative including CT & MRI

I know something is wrong but can't prove to anyone in the medical field. Is it all in my head, like psychological?

June 9
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Reactions
A MyLupusTeam Member

I experience lots of neurological symptoms too. I have myoclonic seizures and hemiplegic migraines as well as lots of peripheral neuropathy. I've worked with neurologists for 27 years and only in the last two years have I gotten the right help. It requires layers of preventative treatments. I get Botox for migraine, occipital nerve blocks, take Nurtec every other day and daily medrol to manage it. It wasn't until my rheumatologist added the steroids that I got relief. I still have attacks though, it is never completely gone. Keep looking for answers and know that you are not alone.

June 11
A MyLupusTeam Member

How disappointing, Tina. I agree with MrsV about looking elsewhere. 😘

June 11
MyLupusTeam

It is absolutely not "all in your head" — these are real, recognized symptoms that can be connected to lupus. Neurological involvement in lupus is well-documented, and it can be incredibly frustrating when tests come back negative while you're clearly experiencing something very real.

Lupus can affect the nervous system in Show Full Answer

It is absolutely not "all in your head" — these are real, recognized symptoms that can be connected to lupus. Neurological involvement in lupus is well-documented, and it can be incredibly frustrating when tests come back negative while you're clearly experiencing something very real.

Lupus can affect the nervous system in several ways, causing symptoms like:

- Numbness and tingling
- Balance and coordination problems
- Headaches
- Cognitive difficulties
- Electric shock-like sensations
- Muscle weakness affecting mobility A MyLupusTeam member shared that their electric shock sensations were "occurring multiple times a day" before they sought help, and they underwent an MRI to investigate the cause. Another member described sensations like "pins and needles from the inside all over" after sun exposure.

Neurological lupus symptoms can sometimes be difficult to detect on standard imaging, which makes them harder to "prove." This is why seeing a neurologist AND a rheumatologist together is so important — they can piece the full picture together.

Don't give up advocating for yourself. Pushing for a referral to a neurologist who has experience with lupus-related neurological symptoms could be a really important next step.

June 9
A MyLupusTeam Member

@GaylaHansen--Well said, Gayla!

June 22
A MyLupusTeam Member

It is such a long journey for some to get a diagnosis. However learning to live with your specific issues is what is important. I found the diagnosis was almost irrelevant because my symptoms are uniquely mine. I think we all have some similar however so many different ones too! It is a crazy autoimmume disease as no cut and dried list of issues! I think be diligent in searching not just a diagnosis but how to tame your symptoms. We live daily with the crazy very individualized symptoms.

June 20

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