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Six years of debilitating illness with no diagnosis, and I don't know what to do

I have been dealing with an unknown, progressive illness for the past 6 years. I was 24 when it started, and I'm 30 now. I've seen multiple doctors and gotten multiple tests with no answers.

It started one morning, I woke up and both of my arms were numb, like when your hand or foot falls asleep, but it was in both of my arms and didn’t go away for the entire day. I wasn’t sure what to do, I figured maybe I could just sleep it off. It worked, I woke up the next morning and my arms were completely normal again.

The day after that, I was standing in the kitchen, when suddenly this really strange feeling came over my head. It’s hard to describe, which has been a problem. I’ve been calling it “dizziness”, and there is some dizziness with it, but it’s also like a pressure, and a cloudiness, and just an odd, uncomfortable feeling that is in my head at all times. I wasn’t sure what to do, and I just laid down for a while but it still didn’t go away. It hasn’t gone away for 6 years now, and has gotten worse. During about the first year living with it, I could still live a relatively normal life. At this point, I can’t sit up or stand for more than a few minutes without the feeling in my head getting so intense, I have to lay down. Laying down relieves the intensity, but it still doesn't go away. Over the years, it's gotten gotten harder to stay up and now I’ve become completely bedridden.

In Jan 2021, it suddenly worsened. It started with a weird feeling throughout my whole body, mostly in my head… again it’s hard to describe, which has been a problem, it’s like a snake or a ghost is running around inside my head, then through my whole body. After this feeling would come over my head, it would be followed by my heart racing, up to 165 and not stopping (I have another medical problem that was thought to be the cause of the dizziness, called an atrial flutter, where my heart beats fast for no reason -- this is a problem that has been cured, but the dizziness persisted).

When I started seeing doctor, My PCP sent me to a cardiologist because my blood pressure and BPM were always hgh. The cardiologist did a stress test on me, but during the laying down at rest part it was over 150, and he stopped the test and sent me to be hospitalized and put on medication to slow my BPM. I had more tests on my heart, an EKG, and the one where they look at your heart with the wand to check the size/strength/and everything, and the cardiologist said everything was 100% normal with my heart in that regard. Then the next day he tried me on metoprolol which seemed to keep my heart beat normal, and has worked ever since. But it never stopped the weird feeling in my head, which the heart issue was thought to be the cause of. After a few of those weird head feeling / heart racing episodes and ER visits in Jan ‘21, suddenly I fell extremely ill. Like, generally sick. If you’ve ever been just sick and know what that feels like, it was like that but times 1000, and I completely lost my appetite for months. I was in unbearable discomfort. That general sickly feeling has never gone away either, but I have gotten my appetite back.  

So I had more visits with my PCP, and more specialists. I was going to see a neurologist, an ENT, and an endocrinologist.

I saw the endocrinologist and he ran different blood test labs. All came back normal. I got a tilt table test to see if it was my blood pressure causing the feeling in my head, and that came back negative. I got a hearing test at the ENT and it was normal, then a balance test with the goggles  laser tracking eye movement, and the air blown in my ears. Those tests came back normal too. My last hope was the MRI by the neurologist. I figured if I had this feeling in my head, whatever it was would HAVE to show up on the MRI. I got an MRI with and without contrast, and it came back completely normal. Oh, and another test where they attach electrodes to my head to monitor brain activity, and that came back normal. I had multiple doctors and neurologist look at my MRI and all said it was completely normal.

At this point I don’t know what to do. There are no more tests left I know about or specialists to see, and still no answers.

I saw a therapist for a while, because they started thinking my problem was mental since they couldn’t find anything with the tests. Basically my therapy sessions were circular conversations where I would tell my therapist I had a debilitating medical condition with no diagnosis and couldn’t stand to get out of bed, and she would tell me I needed to try to do more things, like help my mom cook dinner, or get an aquarium, and I’d just tell her I can’t do those things, I’m nearly handicapped at this point. She basically fired me because our conversations were going nowhere, and, honestly, I didn’t think a therapist is what I needed, I needed a real doctor because there is something physically wrong with me, and now I am being gaslit to believe I’m just imagining that I’m completely debilitated.

Everything is getting harder and harder. I don’t even remember what it feels like to have just a normal feeling in my head because it has never gone away since it came over me 6 years ago. Whatever it is affects the rest of my body too. I’m weak, I sometimes have trouble walking down the stairs, my legs shake and my head feels really weird. I can’t sit up in a chair for more than a few minutes without an excruciating feeling building up in my head and getting more and more intense the longer I stay sitting up – again it’s not pain, it’s like an odd sort of pressure, dizziness, sometimes it feel like my head weighs too much to hold up, and I have to go lay back down, but it is extremely agonizing..

I was recommended to see a rheumatologist by my therapist. I tried to schedule an appointment through my PCP and was told I couldn’t get a recommendation because there wasn’t already a symptom in my bloodwork or other tests that would give me a reason to see one. But, like, that’s WHY I need to see one, to see what new tests they could run or anything a different specialist could do.

I’ve tried being my own doctor and looking up my symptoms online and have read about just about every rare disease, common disease, and illness and haven’t found a single thing that sounds even close to what I am experiencing. The closest thing that I thought it might be was something to do with low blood pressure when standing (can’t remember the name of the disorder), but they tested me for it with the tilt table test and it came back negative.

At this point I don’t know what else to do. I’ve had every organ tested basically and been told I am 100% healthy by multiple doctors, when my health feels like I’m 0% healthy and can barely function. My life is basically over. I’m bed ridden. I have trouble with every day tasks like walking to the toilet and taking shower. I don’t know what sort of doctor or test or anything left there is that could help me and would appreciate any advice.

Again my main symptoms are:
-started with numbness in both of my arms that lasted for one day (this has never happened again)
-constant ringing in both ears
-weird dizzy sort of feeling/cloudy feeling/pressure in my head that never goes away and gets more intense the longer I’m standing or sitting up
-general feeling of sickness to an extreme degree
-trouble moving around, weakness in body
-strange body sensations, like I’m going to black out, or all the essence is just being drained from my body (I just don’t quite know how to describe it except that it feels extremely abnormal all over my body)
-rapid heart beat (that is under control with metoprolol, I’ve even worn a heart monitor for a week that came back with no abnormalities in my heart beat shown anymore.)  
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1081992 tn?1389903637
"I saw a therapist for a while, because they started thinking my problem was mental since they couldn’t find anything with the tests."
Hi, I knew that was coming even before I got to reading that part. That's a very typical thing that happens to people with mystery medical conditions. You are not alone in that.

From what I've seen over the course of years, mystery medical conditions are usually caused by the immune system - especially in originally healthy young people. I know your profile says male, but those are often incorrect at Medhelp; are you female?

"There are no more tests left I know about or specialists to see"
What about chronic inflammatory marker blood tests like IL-1, IL-6, TNF?

The immune system running amok can do just about anything. Like causing brain inflammation.

I'll say more if you reply. I hope you're not worse since you posted in March.
Helpful - 1
1 Comments
No I'm a biological male. The last two tests I got were an MRI (because originally I thought I'd already gotten an MRI but saw another neurologist and he told me what I had done was an MRA and scheduled an MRI). The MRI came back normal. He also thought it might be a breathing problem and sent me to see a pulmonary specialist and I did some kind of breathing test, but that came back normal as well. " "chronic inflammatory marker blood tests like IL-1, IL-6, TNF?" That definitely does not sound familiar so I don't think so. What kind of specialist does that?
134578 tn?1642048000
Have you done any DNA testing? Sometimes they can spot an anomaly that isn't found other ways.
Helpful - 1
1 Comments
Ahh now I can't remember, it was so long ago. I was supposed to get some kind of test that like examined your DNA to tell exactly what type of medication you should be taking, but my PCP said that was like psuedoscience and didn't work. I can't remember if I did it anyway though.
Avatar universal
You probably have already done thos and just not mentioned it, but have you been tested for heavy metals?
Helpful - 0
1081992 tn?1389903637
"it never stopped the weird feeling in my head"
Intracranial pressure can be different than what is found on an arm or wrist cuff.


"It started one morning, I woke up and both of my arms were numb, like when your hand or foot falls asleep, but it was in both of my arms and didn’t go away for the entire day."

Right, stressing the onset is the correct thinking. If any doc brushes off that history, I wouldn't trust that doc. But a Functional Med doc should be very interested.

I'd mentioned 'female' because women are much more likely to have mystery immune conditions. Though that's just a tendency, not a rule; and e.g. when men get Lupus they tend to have a worse case. Nothing is simple.

"I got a tilt table test..."
Your pulse doesn't go up a LOT when you first stand up?  (POTS) When the brain does not get enough oxygen, the heart typically tries to compensate by beating faster.

I'd get a BP monitor and a Pulse-Ox fingertip monitor, and use those whenever you get the head symptoms really bad. Also check for irregular pulse right then.

Since a lot for you is vascular, have you read up on vasospasms? They are intermittent and might not get noticed, by not occurring during any of your tests.



Helpful - 0
1081992 tn?1389903637
"chronic inflammatory marker blood tests like IL-1, IL-6, TNF?" That definitely does not sound familiar so I don't think so. What kind of specialist does that?

-------------

Well, that's inflammation, so Immunologist or Rheumatologist. But I'd instead look for a "Functional Medicine" Internist, which is not a board certified specialty. It's an approach: rather than just going by the book in Dx'ing (which hasn't worked for you), they're supposed to try to figure out the "why" of a patient's problems. More of a logical approach. Like Sherlock.


Also, Lyme and related tick-borne diseases can do most anything, I'd check those.

Helpful - 0
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