need help

Posted by kierafox @kierafox, May 30, 2023

weird painful headache come out of nowhere a little over a week ago along with months of forgetfulness, slight confusion, seeing floaters, and recently my leg felt like it was gonna give out and weakness in the left side of my body as well. facial numbness and weird sensations on the left side of my head, i went to the er again for the 3rd time as the headache was waking me up and doctor dismissed my symptoms this time (did no tests whatsoever just like the last times i went) and basically said it’s all in your head, i am scared for myself and im tired of feeling sick 24/7, i just need advice.

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Perhaps a neurologist would prove to be helpful.

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@casey1329

Perhaps a neurologist would prove to be helpful.

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waitlist times are terrible

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True, specialists are hard to book when you need them but put your name on the wait list anyway because time is going to past and you might really need that appointment. Do you have any teaching hospitals nearby? Sometimes they are easier to get appointments with. My husband needed a neurologist with an Irish back round because he was a big drinker and the 3 previous neurologists didn't make much of it. So I did a google search and found one that studied in Dublin. Turned out the Irish doctor thought the drinking was the problem. Other doctors said it was Parkinsons or this rare disease, CIDP. So my husband stopped drinking, 10 months sober, and has gotten much better. My long winded point is try a google search. You might just get lucky like I did and find a doctor that can see you soon. I wish you all the best !

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I hope you get on the waitlist and then call around 10 am (especially Friday and Monday) to see if there are cancellations.

I am also on a waitlist for a specialist- they said 6 months!

Have you gone to your PCP? If things are urgent, sometimes they can get you in.

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@kierafox We are not medical professionals on Mayo Clinic Connect however we can support you and provide suggestions.

Your symptoms certainly seem neurological in origin from what you wrote. When you go to the ER - which is entirely appropriate when some of these symptoms appear - the ER physicians try to do an evaluation without much background information. I’m not at all saying to let the ER physician off the hook at all. I’m just thinking about what I have heard from ER physicians when they try to figure out what’s happening with a patient. I also agree with you that tests such as CT imaging should be done. And I do not think this is “all in your head”. These symptoms are very real.

Have you seen your primary care provider? Your symptoms seem worrisome enough that I think your primary care provider should be in the loop and could very well make a referral to neurology.

Do you have a history of neurological problems?

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My husband has similar symptoms and it’s been frustrating. He has right side weakness that is worse when he experiences his left side facial burning and pain. He was diagnosed with MS when he experienced complete left side numbness. The facial pain and burning began a few months later. He has seen a number of doctors. In 2 1/2 years he has seen several different neurologists and has an appt for July with a neurologist that specializes in headaches that we have been waiting months to see. Cluster headaches cause burning so we will ask about those. You are having aura too so look at different types of nueralgias or headaches, as well.
My biggest advice is to do what others have mentioned and make an appt at a very good hospital right away, even if you have to wait. Then see your PCP or loca nuero doc that has a very very good reputation while you are waiting. They may be able to start you on something in the meantime. Tests can be handled then like MRIs and blood work. Keep in mind, if meds are needed it may take a while to get the right ones so keep a list of them and how you did with each. Reach out to others with similar symptoms for support. The ER is never familiar with the symptoms my husband experiences. And usually once he gets there the attack end within the hour. However, there are a number of medications that can help with the facial pain. This is worst pain for my husband over the MS. We may finally have a good medication regime for him. His pain is less than it has ever been. I wish you the best and hopefully you can seek some support during this time.

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Start researching vax injuries Dr Malone dr McCullough and how to heal yourself naturally. Drink lots of water… get a natural electrolyte supplement… no sugar, B2 supplements help w migraine prevention. Everyone should take D3. Most people deficient in magnesium. Most people with seemingly random symptoms are dismissed by physicians … need an integrative/functional doctor. Bodies can heal themselves but you will need guidance as to how to rebalance your body w nutrition and exercise.

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Have you checked out Lyme?

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@jjb6

My husband has similar symptoms and it’s been frustrating. He has right side weakness that is worse when he experiences his left side facial burning and pain. He was diagnosed with MS when he experienced complete left side numbness. The facial pain and burning began a few months later. He has seen a number of doctors. In 2 1/2 years he has seen several different neurologists and has an appt for July with a neurologist that specializes in headaches that we have been waiting months to see. Cluster headaches cause burning so we will ask about those. You are having aura too so look at different types of nueralgias or headaches, as well.
My biggest advice is to do what others have mentioned and make an appt at a very good hospital right away, even if you have to wait. Then see your PCP or loca nuero doc that has a very very good reputation while you are waiting. They may be able to start you on something in the meantime. Tests can be handled then like MRIs and blood work. Keep in mind, if meds are needed it may take a while to get the right ones so keep a list of them and how you did with each. Reach out to others with similar symptoms for support. The ER is never familiar with the symptoms my husband experiences. And usually once he gets there the attack end within the hour. However, there are a number of medications that can help with the facial pain. This is worst pain for my husband over the MS. We may finally have a good medication regime for him. His pain is less than it has ever been. I wish you the best and hopefully you can seek some support during this time.

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I’ve had episodic cluster headaches for years. They come on suddenly, stay for weeks, a few a day or less, and usually in the same location at the same time of the day. Then they disappear for months or years. The only thing that relieves the intense pain is sumatriptan and now Ubrelvy. There are others now also. But you have to be careful as to not take it too often as there can be rebound headaches. Can’t win. I don’t pretend to know about adding this to an MS diagnosis, if it’s common. My PCP said I could take ibuprofen along with the med. 800 mg. They don’t interact. I wish you well. Cluster pain is one of the most intense there is. Also, there’s no root cause and no cure. Just management.

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