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Undiagnosed Symptoms Community
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Avatar universal

Help me! No one knows whats wrong with me, losing hope:(

Hello everyone,
Sorry for the long post, but I need help! Since July I have been so sick. Before I became sick, I was a healthy and active 24 year old woman who worked out in the gym everyday was a full time college student and worked part time. It all started with me becoming extremely weak, and every time I would stand up I would become very dizzy and my heart would race. I also was very nauseated, would break out into sweats, had body aches and sharp pains that felt like pins and needles sticking me all over. I thought maybe it was my blood sugar so I started to eat more before I went to the gym. When I was at work one day I felt like I was going to faint even though I had ate. I went to the ER and the doctor done a ton of blood work, CT scan of my head, EKG, and a chest x ray. Every thing came back normal except a little bacteria in my urine. The doctor said I was orthostatic because of my heart rate going up every time I would stand up so he gave me a couple bags of IV fluid and sent me home with an antibiotic. I thought my symptoms was due to the UTI, but I was wrong. I went to my family doctor and he done more blood work to check for other things like Lyme's disease and mono. He also ordered an echo of my heart and for me to wear a heart monitor for a month. The echo and blood work came back clear, except it showed I had active mono. This would be the 3rd time I've had mono in my life. Thinking that's why I was feeling this way I was relieved. I continued to wear the heart monitor over the month of August. My symptoms just kept getting worse. I went back to the ER again cause my heart rate was 150 and I couldn't even sleep. They done more blood work and tests, including an abdominal CT scan to make sure my spleen and liver wasn't enlarged due to mono. Everything came back clear. They gave me a coupe bags of IV fluid and some Ativan to help me sleep and sent me home. My symptoms only became worse. I couldn't sleep for days, my heart rate was going up to 200 bpm. My whole body was in so much pain and I began to have burning sensations. After my skin stopped burning, my whole body went numb. It started with my legs going numb and worked its way up my body. I also couldn't taste, smell, or see good. I hardly could put any weight on my legs. I literally had to hold to the walls to even get to the bathroom because I couldn't hardly walk. I thought I was going to die. My body felt like it was shutting down. I couldn't even eat because I was so nauseated. My doctor done more blood work to check for autoimmune diseases such as lupus and rheumatoid arthritis. He also checked my cortisol levels. Which all was normal. He ordered an MRI of my brain, and it came back normal. Gradually my sense of feeling, smelling, and taste came back. I still can't feel things like I used to. Nothing tastes the same either. Smells make me nauseated, even if its good smells. My personality as even changed. I can't hardly remember things anymore. I went from being a happy, social, and smart person to someone who has so much anger over everything, can't think or focus and hates to be around people. All my friends and family think it’s just anxiety and depression, but I know something bad happened to me. I still feel horrible and weak all the time. I can't hardly get out of the bed. If anyone has any answers to my symptoms, please help me!
6 Responses
Avatar universal
Look into a rarely diagnosed condition called Nutcracker Syndrome (Renal Vein Compression). It’s a complex, debilitating condition that can cause Chronic Fatigue, Orthostatic Intolerance, POTS, Dysautonomia, Muscle Weakness, Painful Legs, Nausea, Body Aches, Chills, Anxiety and Depression. Very few doctors have ever heard of this condition so it often goes Undiagnosed. Join a Nutcracker Syndrome group on Facebook. The symptoms you’re describing are common complaints among people that have been diagnosed with this miserable condition.
4 Comments
JohnnyRockets, are there any hallmark
symptoms, which may be tell-tell Nutcracker Syndrome signs, distinguishing this from other disorders?
I don't know much about this Syndrome.
Thanks,
Niko
Hello Niko,

I only found out about Nutcracker Syndrome (Renal Vein Compression) after I got diagnosed with a similar condition Iliac Vein Compression. These 2 anatomical variants which people are either born with or can occur as a result of a traumatic injury. If Compression of these veins becomes severe, it can start to cause symptoms that are associated with ME/CFS such as Extreme Fatigue, Fibromyalgia, Rapid Heart Rate, Abdominal Pain, Cognitive Dysfunction, and many other problems. Basically anytime someone has unexplained fatigue and pain, as well as many other problems all over the body, Nutcracker Syndrome is a likely underlying cause.
Check out this article about Vascular Compression Syndromes if you can find it. It one of the best I’ve read written by one of the worlds most knowledgeable doctors on these conditions.

Vascular Compression Syndromes by Prof Thomas Scholbach
http://wp12612379.server-he.de/wp-content/uploads/2015/12/Vascular-compression-syndromes.pdf

Thx, I'll check out that link
363281 tn?1518219421
COMMUNITY LEADER
Hello~I am so sorry you are suffering like this. I read JohnnyRockets comment, I think he may on the right track. I know you have all the tests, but, have they tested for hidden food allergies, chemical or environmental allergies. How about the yeast infection called "Candida" all these can cause horrendous symptoms if left to their own devices. Since you have seen all the doctors and had so many test, maybe trying a Naturopathic physician might be a smart move to try next. That was my main doctor back home in the states. They seem to delve deeper into the symptoms and can sometimes come up with ideas and help that the conventional MD's seem to miss.

Also, this is just a thought, but maybe even trying a chiropractor, you may have some misplace vertebrae and they are pinching major nerves, I don't know, I know they have helped others with seemingly impossible issues, mine sure helps me.

I would also try some immune building vitamins and herbs. Echinacea, Elderberry, and vitamins C, D and the B vitamins might be of some benefit along with a good, high potency multi-mineral.

I sure hope you find the help you are needing. God bless you.
1530171 tn?1448133193
I am so sorry about all your health problems.

Yes, something terrible has happened to you indeed.
Mononucleosis, is "usually caused by Epstein Barr Virus (EBV), however,  5% of Mono is caused by Human Herpesvirus-6 ( HHV-6)
You could be suffering the effects of this terrifying virus.
Search under:
"clinical signs & symptoms - HHV-6 Foundation"

Ruling this out might be challenging, since the medical scientific community is partially in denial when it comes to fully recognizing HHV-6.
I have read recently a book tilted "The Virus Within" and I'm just appalled, with the medical scientific communities internal politics ,biases and shortsightedness, in regards to HHV-6

You will need a very good Infectious disease specialist
or perhaps an LLMD, who would be able to help you rule out this possibility.
The earlier you get this done, the better chances to turn your health around, before it starts affecting your mental capacity deeper.

Please urge your family to give you their unconditional support in this difficult time of your life.
Just ask them, what happens, if they're wrong (which I believe they are) and one day, your health condition has deteriorated to the point, where it's just to late to reverse it?
Are they willing to take this chance?
It would be not just irresponsible and foolish, it would also be devastating for them and you alike!
Everything points to an underlying, undetected pathology so far!
Fell free to show them this post, if needed.
I wish I could talk to them and make them realize that
likely, you can only get better, if they are on the same page with you.

Navigating through the medical system and dealing effectively with doctors, when it comes to complex conditions, is a huge undertaking, for even the toughest
and strongest. And you're far from being that....

Best wishes,
Niko
1756321 tn?1533738018
Looks like mono triggered POTS (Postural orthostatic tachycardia syndrome).

Here is a list of the common symptoms of POTS (excerpt from the blog Naughty little mast cells)...

"Mental: Anxiety, Brain fog- difficulty concentrating & recalling words/facts/memories, Depression

Gastrointestinal: Nausea, Lack of appetite, Diarrhea, Constipation, Blood pressure and heart rate swings from eating/digesting

Dermatological: Pale skin, Purplish discoloration of skin in hands and feet due to blood pooling, Chronically dry skin, Feelings of pins and needles/shocks/tingling or numbness, Vibration sensitivity

Respiratory: Shortness of breath (easily winded)

Auditory: Sound sensitivity

Cardiovascular: Heart palpitations and high heart rate (worsened by upright posture), Fainting (syncope), Near-fainting, Lightheadedness, Dizziness, Difficulty sitting or standing (orthostatic intolerance), Graying-out upon standing, Raynaud’s phenomenon

A subset of patients have episodes of very high blood pressure. Some may also have episodes of low heart rate (bradycardia).

Vision: Light sensitivity (due to pupil dilation), Dry irritated eyes, Intolerance and sensitivity to contact lenses

Pain: Headaches, Migraines, Chest pain, Aching shoulder and neck pain (coat hanger pain)

Other: Fatigue & Exhaustion, Exercise intolerance, Shaking (tremulousness), Cold hands and feet, Frequent urination, General but strong sense of “feeling awful” or “feeling very wrong” without being able to point to any specific symptom, and more."
1530171 tn?1448133193
I just read Red Star's response and it makes a lot of sense.
I think the key is to get an accurate diagnosis of the underlying cause, which manifests in relapsing mono AND triggers POTS!
The accurate diagnosis though is a huge challenge, since "proving" such an underlying infectious condition either chronic or relapsing is present, is  beyond most doctors expertise and scope of practice.
In HHV-6 infections up to 90% of patients with IgG antibody titers of 1: 320 or higher have active infections which can be treated, when results for other infections are abnormal.
Some of these infections are not present in the blood at the time of testing and have gone into the central nervous system, which may render test results more difficult to interpret accurately.
I suggest you look for a good Infectious Disease or Functional Medicine Doctor.
Cheers,
Niko
Avatar universal
That’s awful!  Have you had bloodwork done to check for an adrenal tumor?  Also ask about dysautonomia. Hope you find some answers and relief.
1 Comments
I didn’t see the replies you already got before I commented!  
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