Dealing with symptoms from unknown cause

Posted by tiymay @tiymay, Sun, Feb 17 8:06pm

While pregnant with my second kid, I started having severe dizziness and nausea. Movement made me very light headed and I’d start feeling ill from it. One week on a trip, I ended up extremely dizzy, fainting and hitting my head. After giving birth, it started getting better. It’s mostly only happened some mornings getting out of bed. No one ever had an answer- they said it’s common in pregnancies and may just be vertigo or other similar issue that they don’t think is serious.

Now 3 months after giving birth, I was struck with major symptoms that almost caused me to crash my car. First the lights (it was night) started seeming so bright I couldn’t see or focus well. The light started making me very dizzy. I had nowhere to pull over so I kept driving. My tongue started going numb, then radiating through my mouth and around face. My hands started to go numb next, and I was finally able to pull over though very slowly.

It’s been 2 days and my tongue and mouth are almost back to normal. My fingers all have some numbness still. Lights don’t bother me as much, but I feel like I have extremely delayed reactions- everything is still just slow like when I had a hard time pulling my car over. My brain seems to be processing slowly- my eyes track things slowly, my body moves slowly, I’m thinking slower.

I’ve been to the ER after the fall and the driving incident. And for regular doctor appointments about it . It’s always dizziness or vertigo and no explanation for the numbness or anything else. They said the numbness is probably stress or anxiety induced but I wasn’t abnormally anxious or stressed either time. And since the symptoms have continued (though more mild) I don’t think the explanation makes sense. My blood tests, blood pressure and EKG were normal and they don’t seem to want to do any other tests. I’m not on any medications and they haven’t recommended any.

How have people handled these situations when doctors don’t listen and you’re given answers that don’t cover all your symptoms and don’t make sense?
I’m also scared to drive now and not sure how to deal with the fear of the symptoms becoming so bad again. How do you manage your symptoms there’s no known cause and so no treatment for?

Hi @tlymay and welcome to Connect. That must be so frustrating to be without a diagnosis and have these symptoms continue.

I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 @lmherman and @mittzyvon as they have experience with mystery diagnoses and may be able to offer you support.

@tlymay how are you feeling today?

Liked by Leonard

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Hello, My name is Laura and my daughter has the same issues. Sorry to hear it's happening to you as well. She has a little boy, her first one and she's scared to have a second one in the future due to these issues. The doctors told her it was her hormones that are missing with her because now she has to get herself and her body used to not being pregnant.
I only had issues about being thrown off balance or into something. After a year, of giving birth my symptoms went back to normal, if your symptoms persist, please get a second opinion. Systems like these should not be ignored, you might have a pinched nerve or something else if an OB/GYN can't help try a chiropractor maybe it might be something simple.

I hope you get better.
Laura Walters

Liked by Leonard

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Hoping you get some answers soon. I think doctors pull the "anxiety" card when they don't know the real cause of the problem. Definitely neurological processes such as MS, cervical vertebral problems and autonomic dysfunction could account for your symptoms. I would suggest seeking a second opinion and being assertive. I once had half my face go numb and it was scary. It was felt to be a hemiplegic migraine.

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@tiymay Hi May and welcome to Connect. Your symptoms really must be frightening for you, I know they would be for me.
I had symptoms that were not added up for almost a year and a half. The symptom that started a search for a cause was episodes of confusion. When I finally got a diagnosis I discovered that other more vague symptoms I had — shaky hands, declining platelet counts, shaky hands — were all related, The confusion episodes led my doctor to send me to a neurologist. He, after two office visits and a hospital admission finally suggested it was my liver, which it was.
Obviously your symptoms are entirely different, but what I learned when I did not get a diagnosis within a reasonable amount of time, was that I should not have waited so long, I should have gone to a major medical center. I live 55 miles from Boston so that should have been an easy call. In the future, if I ever again have something not diagnosed I’ll be on my way.
I hope you will get to a different doctor, a really good diagnostician, and find out what the cause of your problems is. I would think a neurologist may possibly be the first doctor you see. If you need to get a referral from your PCP, insist on getting one.
I think you are very smart to not drive and take a chance until you know what the cause is, and if you can get this under control
JK

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Thank you all for the responses. I’m feeling almost 100% but still having some diminished sensation in the hands, and slowing. I appreciate the encouragement to get another opinion; I have an appointment scheduled and hope to get some insight.

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I had another episode at lunch, where I got lightheaded, then dizzy and then the numbness began again. I tried breathing, drank water and it lessened until I walked to my office. I had to leave because I was too lightheaded to work. I’m concerned because these symptoms are impacting my job now.
They got me in for a doctors visit today, and more normal blood pressure tests and a normal EKG. They’re sending me in for an echocardiogram, due to a family history of heart conditions, and I’ve been diagnosed with a heart murmur previously. This doctor seemed more genuinely concerned, but very puzzled. I’m hoping he’ll be able to help find an answer.

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@tiymay I had to ask the Dr to refer me to a Ear Dr. This Dr sent me for vestibular testing in ears a2 he test

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The search for a cause has continued. My PCP has now observed me having a very irregular heart rate but it’s intermittent and my EKGs were normal, as was my echocardiogram. I now have a monitor for 30 days for them to check my potentially heart-related issues and symptoms. I have not had any severe symptoms while wearing it so I’m not hopeful this will lead to an answer unfortunately. I’ve also had some abnormal blood tests but nothings been conclusive. So the search continues.

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My 14 year old daughter has suffered for many years from multiple symptoms including extreme halitosis that seems to come from her stomach (not teeth or gums.) Constant exhaustion, catching colds and flu easily with long recovery times, sensitivity to even small amounts of sugar with stomach pain and dizziness to follow sometimes for several days. She feels hot flashes and is extremely hot all the time to the point of being ill from the heat but can't discern cold. She will go outside without winter clothes in 20 below zero weather and say it feels good. She can't tell that her extremities are actually in danger of freezing. She also has purple toes all the time even with exercise. As her menstrual cycle started she had extreme migraines for two years, each migraine lasted for two weeks straight. These blessedly have gone away but been replaced by the hot flashes. Our doctors are stumped. Does anyone have any experience with something like this?

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Hi @vmarie and welcome to Connect. You may have noticed I moved your post to this existing discussion so that your post would be seen by more people. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so frustrating and hard to watch your daughter suffer so much. I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 @lmherman and @mittzyvon as they have experience with mystery diagnoses and may be able to offer you support.

Back to you @vmarie, have doctors tried any treatments as this time? Has she had blood tests to see if there is a chemical imbalance somewhere that could be causing some of the symptoms?

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@ethanmcconkey

Hi @vmarie and welcome to Connect. You may have noticed I moved your post to this existing discussion so that your post would be seen by more people. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so frustrating and hard to watch your daughter suffer so much. I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 @lmherman and @mittzyvon as they have experience with mystery diagnoses and may be able to offer you support.

Back to you @vmarie, have doctors tried any treatments as this time? Has she had blood tests to see if there is a chemical imbalance somewhere that could be causing some of the symptoms?

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@vmarie I am sorry to hear your daughter is going through such difficult symptoms. As @ethanmcconkey indicated, I went almost a year and a half without a diagnosis for symptoms which I discovered later should have made a diagnosis obvious. My problems were nothing like your daughter's, but I know the frustration of not knowing what is causing problems.

What I learned from this for myself, is that I will never, ever go a long time again without a diagnosis. I live in southern NH, about 55 miles north of Boston. If ever again I am not diagnosed in a reasonable amount of time I will head to Boston to a major medical center that is a teaching hospital. For me, the choice is Mass General Hospital. I go there now for virtually everything except for my PCP. If a diagnosis continues to elude your daughter's doctors, you may need to go elsewhere also.
JK

Liked by capausz

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I’ve now had additional monitoring of my heart, including wearing a monitor for a month. They ordered it due to worsening and more frequent chest pain/pressure. Though I felt symptoms while wearing it, they said it showed only mildly abnormal heart rates, nothing that should cause the symptoms I’ve been having. I was also sent to a neurologist, who is sending me for a brain MRI and more labs. My physical exam was mostly normal with just decreased sensation in the face and feet. She didn’t seem to think there was much to go off of, and thought a Migraine medication could help the dizziness symptoms (though no other symptoms). If no tests or MRI show anything, then they’ll be considering next steps. For now, I’m remaining disappointed with the amount of appointments and tests and lack of results. So many people act like I’m just making it up or being dramatic so it feels even more frustrating.

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