Recurrent episodes of intense symptoms with no answers - I Need Help

you poor dear your still as what we call a spring chicken the mind is a powerful tool it can also turn against you i have always been puzzled by that concept i think its something to do with not finding the positive out look thats inside every human being granted you may have some physical problems im in the same boat but your list far out weighs mine, im in my sixties and have experienced pains in body in the last 3 years id not experienced before as long as your eating a varied and healthy diet for self and not starving again i can sympathize with the eating problem i was always taught if if you dont want to eat you must force yourself to keep your energy up this was taught to me by my mom and nan, sometimes i think in reverse and do the opposite that tends to work.

Yes I have had a lot of weird symptoms. I am lucky to have a lupus diagnosis on my record- even if I am not sure that is what it is. I have a high ANA and now also have high anti-centromere antibodies indicating scleroderma. But neither of these explain the various neuro symptoms for me. Have you had an ANA done ?

I also had Lyme. The Elisa test is used and if positive, the Western Blot is then done. The Elisa has a lot of false negatives, I have been told, and there is controversy about how to interpret the Western Blot. So a negative may not mean a negative.

For you, I would strongly suggest a functional medicine doctor. You may have to pay out of pocket but it's worth it if you can afford it at all. They look at the whole picture and are very accustomed to patients like you (us).

Am so sorry to hear. I, too, felt the same from doctors. For 4 years.
Finally one nurse told me to get a brain mri with and without contrast.
And that was where the problem was found. Not to scare you, but the brain has a lot of control over your body.
I was diagnosed with a meningioma and, believe me, I tracked all of the doctors down that I went to and told them to never dismiss a patient. Have them get an MRI of the brain. It’s impt to get it done with and without contrast.
Many prayers. Please keep us posted. God bless.

Some of us cannot do contrast. I wonder what we can do then!

Constant pain is the pits, isn't it? You don't want to mention it because people will think you're crazy, but if you don't mention it, how will it ever be different for you?? Here's a couple of things you might look at:
certainly Multiple Sclerosis, POTS, fibromyalgia, Sporadic Hemiplegia Migraine.
ALL of the things you listed in the first paragraph can be part of the Hemiplegia migraine aura, then the migraine to draw it all together. A migraine like nothing you've ever had before. Non-epileptic seizures could be the shaking, weakness and co-ordination - and that's an aura for the Hemiplegia migraine. Vestibular (eye) drooping and vision changes are in there as well.
It all rather looks like someone might be having a stroke or TIA, but for those of us with HM, we know the difference.
I believe the Mayo Clinic have a really good headache clinic - give them a call - https://connect.mayoclinic.org/discussion/hemiplegia-disorder/

I very much appreciate everyone's comments. I finally went to a new doctor (my family doctor left the country and apparently isn't coming back) and she watched me move my hands and immediately told me she was sending a priority referral to a neurologist. To be quite honest it was such a relief to be listened to that I almost cried, haha.

I'm wondering if anyone has any advice for meeting with the neurologist, or if I should make another post. I'm a bit afraid that what happened with the hematologist (extremely dismissive, wouldn't even let me tell him my symptoms) will happen with the neurologist. I'm afraid of ending up "outside of the loop" again and having to start from square one or wait until things get worse. I'm really frustrated with having one doctor tell me that something is awfully wrong with me and then have the next tell me it's probably a red herring or false positive.

I've heard a variety of things about mentioning illnesses that match up with your symptoms to doctors. I've heard that it can help them get an overall picture if you're experiencing a lot of different symptoms but I've also heard that doctors can push back pretty hard because they're sick and tired of patients trying to self diagnose, which is very understandable.

I'm almost wondering if I should take a stance that I want to rule everything I possibly can out.

Thanks again everyone, I really appreciate it.

What was it about your hand movements that the doctor reacted to?

I totally get why you are nervous about being dismissed. Hoping the doctor you saw is communicating with the neuro, or maybe you can print out the notes.

It does tend to go better when you can say "My primary care doctor wanted me to see you..."!

My hands are still when not moving/held still in the air but they shake pretty aggressively when I try to move them, especially when trying to hold something or grab something. She watched me move my hands up and down. I also told her that I'd had numbness in my fingertip that has now turned to pain and it makes touching anything with that hand difficult. I've also been having some coordination problems where I miss things I'm trying to grab, that sort of stuff.

I am hoping so too! I asked if she wanted me to write down my symptoms so she could attach the file to the referral but she said she'd send my bloodwork and to keep the list for my meeting with the neuro. I think she said she's planning on writing down what I told her in the referral. I don't remember too well!

I can't help you with your question but maybe in another way. Many if not most of us on here are in need of special people. Just because someone graduated from medical school and calls themselves a doctor means very little. Each of us must search out the real healers within our individual orbits. Don't give up. The ones that ignore you or are sarcastic or unhelpful are because they have a diploma but no real knowledge. I have a list of 100 doctors and maybe 15 of them are really good. It doesn't take a high IQ to pass medical school it takes a lot of money. I spend hours on the internet every single day because I have symptoms that are different from what the book says but they are real. Each of us is slightly different even if we have classical parkinsons symptoms or in my case "brain syndrome" that's a really broad bucket of worms. Please don't give up but take command and go from there. I start with google because they have a spectacular search engine. I am learning chatgpt4 because it is also a powerful search engine and you can ask the same question in 10 ways and get incredible results that have nuanced differences. Bless you.

From your description, which you want to highlight when giving the neuro your history, your tremors sound like active, not passive, tremors. Passive tremors--i.e., when, say, the hand is at rest--are associated with Parkinson's; active tremors--e.g., when trying to hold a glass of iced tea at arm's length--are often associated with essential tremors. I had nonParkinson's tremors, which may or may not have qualified as essential tremors, and they disappeared after a one-yr course of propranolol.

I get your concern about how to present to the neuro. It's a stressful transaction. Optimally, you give the neuro the facts, and the neuro analyzes them, diagnoses your condition, develops a treatment plan, and executes the treatment plan.
There's a lot of play on the neuro's side of things, so it's understandable that you may want to go beyond merely providing the facts.

Several factors must guide your decision as to whether to do more than present the facts. Prob the most important are the neuro's competence and enthusiasm. Without both, the neuro may need a nudge--sometimes, more than a nudge. At one time, you may have had a choice among neuros, but, where I live, finding a neuro is like finding an obstetrician in Idaho.

Other factors are impt. A recurring referral source, such as a nearby primary care dr or hospital, helps a lot, as the neuro doesn't want to lose future business. On a related note, how busy is the neuro at present? And how urgent are your needs?

It's a tough puzzle to solve. You can stay in your lane and hope for the best or you can go for the gold by "oversharing" with your analysis, rule-out diagnoses, and treatment parameters, even plans! I tend to wander out of my lane, at least to the extent of some analysis, but try to stay on the roadway by going no further. At the end of the day, I'd rather be frustrated that the neuro fired me than if I stuck to a presentation of the facts and got little or nothing in return. Better to have tried and failed?