Medical Mystery - Can anybody help?

Jeff2001

My current symptoms:

• Extreme fatigue and tiredness throughout the entire day 
• Dissociation / feeling of faintness 
• Extreme mental fatigue and brain fog 
• Trouble concentrating and poor memory 

This all started when I was 15 years old. I was in the gym when I started feeling a little lightheaded and weak and decided to go home early. It was nothing alarming; I thought I simply hadn’t slept well or hadn’t drunk enough water. However, from that day on, the symptoms listed above slowly became more and more apparent day by day until about a month later I completely stopped working out and started seeing doctors for it. 

Over the last 7 years I have done every test under the sun. I could not count the number of blood tests, MRI’s, x-rays, urine tests, stool tests, ultrasounds, ECGs, PFTs etc. that I have been through. I have been to neurologists, cardiologists, pulmonologists, gastroenterologists, endocrinologists, internists, osteopathics, etc. Every organ in my body has been examined thoroughly and not one single doctor has found the cause of my symptoms. As far as the tests are concerned, I am a healthy individual. If there was a deficiency in some test value, I supplemented it until it was normal and it did not improve my symptoms. 

I want to make clear that this is not simply a level of fatigue that is uncomfortable; it is entirely debilitating. I have stopped doing several activities because I physically cannot keep up. There are days where I skip plans with friends or don’t even leave the house because the feeling of fatigue is so extreme that I feel like I will pass out or collapse. 

I have never actually passed out from the cause of these symptoms over the last 7 years, but the feeling is constantly looming. There are times when I am simply sitting in a room with people and suddenly feel so disconnected from reality that I need to leave the room and go to the bathroom in fear of passing out in front of everyone. 

I have also gone down the psychological track. I was diagnosed with general anxiety disorder in late 2018 and have been taking Cipralex for it. I have felt significant improvements in my anxiety levels since then, but not in my other symptoms. I manage to exercise around 5 days per week, although I do this at home (out of fear of passing out at the gym) and it is an absolute battle to even get in a 45 minute workout. 

Some other important information:

• I am a 22 year old male, 198cm tall and 95 kg
• I don’t drink or smoke or do any drugs
• I have no vitamin / nutrient deficiencies which would cause these symptoms
• I am currently trying to get a sleep study done because I feel like I get terrible sleep 

Does anybody have any clue at all what the cause could be? Maybe you know of somebody with very similar symptoms that has gotten a diagnosis or have any idea of something else I could investigate / test for. Any help is appreciated.

Jimm_Scope

Hey @Jeff2001, this sounds like a long, difficult journey. I'm not sure how much help I will be, I'm no doctor and I don't think I have what you have!

I am curious, do you know what vitamins you were tested for? I assume this has been covered since you've had tests over so many years. But I've heard folic acid is one that people can often surprisingly be deficient in which makes a big difference.

I imagine that's already been looked at, but thought I'd mention it anyway!

How are you doing today anyhow?

luvpink

I have most of the symptoms you describe.

I have had cfs for 16 years but it has worsened.

I was found to be deficient in vit D, B12 and magnesium.

Journey

Have you discussed the possibility of M.E/CFS with your Dr? Honestly you sound like I was when I was diagnosed at 25.

sparkleapril

older01

It could be any number of things. I know it might seem odd in a young person, but fibromyalgia works in the exact same way that you describe. There’s no set test for fibromyalgia, more a case of ruling everything else out before it’s considered. Fibromyalgia can be brought on by many factors including a traumatic event. There’s little research into this, but it’s worth considering if most things are being ruled out.

sparkleapril

Hi @Jeff2001

Sorry to hear about your illness and you will get answers you just got to keep pushing.

Sometimes tests don't pick things up.

Last year my heart stopped 3 times and then I started to have sezuires.

My legs locked and I haven't been able to walk since July last year I am in a wheelchair.

It's been so frustrating getting the doctors and neurologist to listen but I stood my ground and kept telling them I am not well.

Finally been diagnosed with Hemiplegic migraines, non epileptic attacks and function neurological disorder.

I am always tired and my left side of my brain doesn't work properly it sends off wrong signals.

With function neurological disorder you don't always get all symptoms even tho I do and it's doesn't show up on all the tests.

Last year the doctors was saying it's mental health and to get out the wheelchair and walk but I physically can't. I fall or have a sezuire or my legs lock.

I am not a doctor but look into function neurological disorder.

luvpink

https://forum.scope.org.uk/discussion/comment/892921#Comment_892921

I was diagnosed by three different rheumatologist with having fibromyalgia.

I underwent extensive examination by the first one I saw that lasted around four hours.

He was a specialist in fibromyalgia.

Rosie_Scope

Hi @Jeff2001, have you and your doctor ever looked into Post Orthostatic Tachycardia Syndrome (Often shortened to POTS)?

Sometimes that can cause fainting and fatigue among other pretty debilitating symptoms. POTS and conditions like M.E. or Chronic Fatigue Syndrome can sometimes arrive together too. Obviously I'm not medically trained so I can't give medical advice, but it might be worth a look if you haven't already considered it 😊

older01

@luvpink You may have had a series of tests to rule out other diagnoses leading to your diagnosis, but I assure that it’s a diagnosis that has no specific scientific test despite hundreds of thousands of people having been diagnosed with it or are not aware that this is what they are suffering from. My partner was as fortunate as yourself in seeking the advice and further diagnosis from a trained physician who has seen people slip through the net without getting the correct diagnosis.
Best wishes to you!

luvpink

https://forum.scope.org.uk/discussion/comment/893047#Comment_893047

I didn't say there is a 'specific scientific test', only that I have been diagnosed by three different specialist rheumatologist.

Prior to that I didn't have any other tests investigations to 'rule out other diagnosis'.