All tests so far are negative but I still feel so ill

Hi everyone,

I'm Mike (35) from the UK.

I've been ill since before Christmas with a lot of symptoms which to date the doctors have been unable (in some cases unwilling) to diagnose.

So my symptoms are:

Chest pains - feels like a stabbing pain lasts for a second or so then aches for a while after. Doctors say it's just muscular

Stiff neck - hurts when I move my neck around. Doctors say maybe you slept funny

Shoulder joints ache - constant dull aching. Again slept funny apparently.

Shortness of breath - walking up the stairs I am out of breath. Doctor questioned my fitness.

Frequent bowel issues. Doctor questioned diet

Always throaty but no change in amount of times I need to "go" and mouth always feels dry.

Eyes sore all the time. And feel like I have sand paper in them. I wear contacts and I take them out it's even worse. And sensitive to light more than I've known before

Constant headaches

Always tired even if I sleep for 8-10 hours

Dizzy and lack of balance leading to blackouts on a daily basis.

Feeling of about to be sick a lot but haven't physically been sick as yet

My hearing seems superhuman everything seems to be so loud now

I get annoyed really fast about the smallest things that have never bothered me before

And as a result of all this I feel really low and feel like no one believes me at all

My brother suffered bacterial meningitis at the same age and was not diagnosed for ages and he has permanently been altered because of it.

So far I have had the following tests:

A&E visit 1 - bloods taken all negative, chest x ray normal, ecg normal.

Doctor visit 1 - blood taken was told no real cause for concern.

Doctor visit 2 - told probably muscular myalgia and to test

Doctor visit 3 - told maybe a viral infection but it will pass no need for any drugs or further treatment just rest

A&E visit 2 - more blood taken no cause for concern, x ray normal, ecg fine. Whilst there I was told nothing wrong just need to rest. After being told that I was sent to a room to be monitored and my temperature spiked, I started sweating loads, blood pressure dropped and I blacked out. Even then they just said it was nothing to worry about.

A&E visit 3 - had an ultrasound of the heart no issues and a stress test ekg (treadmill hooked up to heart monitor) which lasted 7 minutes I was out of breath after 30 seconds but got to the end. Result was normal.

Doctor visit 4 - told that I must just be over thinking things and that I have just had a minor viral issue and will be fine in a few days

Doctor visit 5 - new doctor. Who also said probably just a virus and it will pass and ordered a spirometry test (lung capacity test) and this was normal.

So to sum up nothing wrong but I'm still suffering from all the above issues and having spoke to my brother he had exactly the same problems.

My question after this long winded post (sorry) is do you think it could potentially be meningitis and should I be pushing for furthrr testing?

10 Replies

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  • Hi Mike,

    I was diagnosed with a Viral Meningitis in October 2016.

    My general experience, to support your numerous visits to the doctor, is that there is not much understanding around meningitis and often the doctors are clueless.

    Some of your symptoms does match the ones I suffered with, which was stiff neck, shoulder pain, dizziness, sickness and worst of all - the constant painful headache.

    My headache was so bad, that I could not even stand or sit up - the only way the pain was manageable was if i was in a sleeping position, not moving at all!

    When the pain started and symptoms started to show, I was admitted to the emergency room. A number of tests such as blood and pressure test, urine test and CT scanning was performed - none which revealed anything. The doctors were ready to send me home, saying that it is most likely a normal headache.

    I was lucky that my sister works as a laboratory assistant in Denmark so she helped looking up the symptoms and was pretty sure it was a meningitis. She asked me to ensure that the doctors performed a Spinal tap.

    Since my worst symptom was the headache, the spinal tap is the only way to identify any infection in the blood running to the head.

    It was only when i refused to be send home until this was performed that they decided to do this and I was a few hours after this procedure diagnosed with Viral meningitis.

    With all that said ( sorry to make it so long) - there was not much the doctors could do, as a viral meningitis is treated by your body only. I was send home a few hours later. Even though I could not stand/sit I was told to go home and relax and i should be back to normal in 2 weeks time.

    Just dont forget that we know our body better than anyone else. If something is wrong our body will tell us, so even if your doctors think it might be something else - follow your instinct and follow what your body is telling you.

    They did say 2 weeks, but only in Jan 2017 i have started to feel like my normal self.

    P.S

    I cant say for sure if you have a meningitis, but do think you should push for more test if you can see that your body is not normal and no improvements.

  • Hi Jazzy,

    The headaches for me are just getting worse all the time. Every noise feeling like it couldn't be louder and the only way to feel semi ok is to hide under a blanket in my room with lights off.

    Hopefully my next doctors visit will be more productive.

    Hope you fully recover soon.

  • I agree with JazzyJazz91. A spinal tap will show BM or VM. Hope you feel better very soon.

  • Hi Trakylynn,

    I am going to speak with my GP and get them to investigate further with a spinal tap to either rule out or confirm.

    Thanks and I hope do start feeling better as I can't imagine feeling much worse.

  • Lumber will give defininative answer for meningitis x

  • I had the same chest pains with my VM. The VM I had was caused by Shingles virus and started as a sharp pain in the center of my chest which came and went.

    It developed into the head pain and symptoms you describe. I went to ER (US) and they did lumbar puncture. Had to wait for it to be 'cultured' to see if it was bacterial or viral. In hospital for 10 days. It was VM and was released and like you was bedbound for weeks.

    I am on acyclovir to fight the virus and 4 years later on a daily maintenance dose.

    It took along time to get over the impact of it. Luckily I had a friend who is a head injuries nurse and she really helped. She told me that all suffered of Menigitus have had 'closed head injuries'. That we have to re learn lots of things....eg I could not scroll on a computer or track objects with my eyes or watch fast moving film as I could not process things like I did.

    I rested when I needed and finally am back to normal...after a couple of years.

    Good luck, thinking of you.

    Ana

  • Hi Vespa

    Glad you are feeling better and had good support to get you through it all.

    I'm still in limbo waiting for any diagnosis of anything at the moment.

    More tests done but results not fully explained yet. I have an appointment next week to discuss so hopefully means nothing too serious. But this is the UK and the NHS where I've been made to feel like I've been wasting their time.

    Enjoy full health it sounds like it was a long road x

  • I had exactly the same symptoms when i had sepsis. It's not picked up on any of the tests, normal blood, ct scan, urine samples etc. The only one was the "blood cultures" test. Then they finally had me on antibiotics intravenously for 3days and orally for over week more. Please ask them to do a blood cultures test as you feel it may be sepsis or you will go down hill very quickly. I went into septic shock after 3 days after they ran every useless test.

    I hope you're okay now.

  • Hi Natalie,

    Hope you are feeling better.

    I've had more tests done but won't know full extent until next week.

    Thanks for your well wishes x

  • Update

    More blood test this time there are abnormalities but the doctor has made an appointment for me a week from now to discuss the results in full. Delay is due to the culture test not being ready yet.

    White count up, rheumatoid count up and viral indicators shown as present is all I have been told so far.

    Still feeling no better headaches and chest pains eased off a little but they are back with a vengence again now. Feeling dizzy and weak all the time as well it's stopping me from enjoying anything now and making me feel really down.

    Hoping the doctor has some answers for me and a diagnosis so I can atleast start the road to recovery again.

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