Extremely scared and in need of help, I feel like I am dying but can't find a cause!

Okay here goes nothing... My story begins a few years back (3-4) to be exact. I began to get a fear that something was severely wrong with me, and I don't know why. It started out a pain in my head that led me to feeling funny and the beginning of not being able to sleep good at night for as long as I can remember. Ontop of that was an incident with Marijuanna that left my mind completely messed up I could not think clearly, I felt like nothing was real anymore, like I didn't know my own family or friends or who I was, my memory was completely zapped, along with my ability to sleep. Then I started having stomach problems, went to the hospital and they gave me magnesium citrate, drank it, had horrible diarrhea for days that left me feeling weak, with a strange pain in the left side of my stomach and neurological problems with my senses. I couldn't feel much, my legs feel heavy all the time, feet feel numb, just felt very off. At some point I began having chronic head pressure/pain constantly day in and day out, along with problems with my nerves and feeling, and memory, and stomach, and sleep. I wake up every morning with a sick feeling in my stomach and the same sick feeling in my head. To make matters worse I recently gave birth to a beautiful baby girl but literally almost died or felt the closest I have ever come to death. I got a severe headache and shortness of breath feeling the night after giving birth. Was diagnosed with a "spinal headache" which they did a blood patch but guess what? I still have the headache that persists 2 months later.. Ontop of everything else I've been experiencing the past few years. I literally feel like I am dying everyday. I have gone to the ER many times hoping for a diagnosis so they can make me feel better and put my mind at ease so I can be on the recovery to healing. I feel as if I will never get better, and my symptoms will just continue to get worse until eventually I die. All I want is to feel good enough to take care of my daughter and watch her grow up, and be a family with my fiance. I know if I see a psychiatrist they will put me on a bunch of meds that may worsen things. I've been to two neurologists one diagnosed me as depressed, the other recently put me on medication for headaches and sleep which don't help. The headaches are so bad I feel like I can't breathe, and that something is seriously wrong somewhere in my body. I've had CT's and MRI's, EKG's, XRAYS, and all that but nothing comes up. I feel hopeless. My biggest fear is dying, it's all I think about and I feel like it's coming for me soon and idk what to do. Any support would be much appreciated..

12 Replies

  • Sounds just like me. I was tested for B12 deficiency and I am deficient in b12, folate and vitamin D.

    B12 deficiency is mast as our bodies need b12 for cell production and th protect the myelin which encompasses our nerves. If the myelin is damaged through deficiency it can cause spinal cord issues.

    It affects every system of the body and if left untreated long enough will cause irreversible damage.

    It is often misdiagnosis MUltiple Sclerosis...amongst other things.

    It causes memory loss and dementia, problems with walking, bowel and bladder problems and lots more.

    First thing is to get serum b12, folate, vitamin D and ferritin bloods as well as full thyroid panel and liver test. 

    Mostly they will tell you all is ok but be sure to get a copy of your pathology results and then go to one of the reputable Facebook support groups and post your results the.

    They will interpret them and give you good advice.

    If you are deficient, or indeed it has led on to Pernicious anaemia, then you will need injections for life.

    They are water based, non toxic cobalamin (better known as vitamin B12)

    You will have six loading doses over two weeks then probably one injection thereafter every thee months, depending on how bad you are.

    If neurological symptoms are really quite bad, "you should receive injections every other day until no further sign of improvement" as quoted in the BCSH guidelines.

    Patients struggle to be taken seriously by 90% of doctors so it can be a bit of a fight but the support groups are good for this.

    Don't be afraid to ask any questions if you get lost in it all...you can ask me...or them.

    That's assuming you are deficient. It could be another underlying problem.

    The following gives you an idea...most cases are because patients have been left untreated for so long.

    I was left untreated for 13 years and told it was fibromyalgia.

    Take care. Xx

  • Great I'm glad I didn't read all of your response as it would send me into a panic thinking all that may happen to me. People with health anxiety don't need to know what could happen if left untreated. Not a good thing to post 😡

  • That's exactly right that will put us over the edge. Living k life with severe panic anxiety disorder really stinks. Shouldn't love with negative angry people either I am right now my sister.I am living with her because my husband passed away on October17th only almost 6 months ago me and my dog ended up living with my Sister had to give up our home and just move. I am still grieving and struggling with anxiety because my sister is just downright mean.

  • I'm sorry to hear of your troubles stinkbugs05. 

    I have no intention of tipping anyone over the edge and I apologise if you misinterpreted my post as negative enough to do just that.

    I too have had my troubles, like many others on here and my anxiety levels have shot through the roof, what with my own illness, my son's paralysis, the troubles in N.Ireland etc but we get through, despite the anxiety attacks.

    My intention was in trying to help this person recognise that there may be a real medical reason which could be quite easily diagnosed or eliminated and thus establish whether it is linked to her anxiety, ( as anxiety is a symptom,) or not.

    Either way, I was attempting to help.

    I am sorry I got it wrong and upset people.

    My humble apologies.

    With illness, my so

  • Oh I knew your intentions were good I'm sorry if I made you feel like you had to apologize you were just trying to help. No worries😐.:)

  • So sorry to hear of your terrible experiences. Sounds like anxiety and panic. I to suffer from both, thinking the doctors have missed something and that I'm going to die :( I have had everything except an MRI and same with me nothing comes up which is great as I know that nothing is wrong with what they have scanned and tested. I now look at it like that :) It's reassuring that they haven't found anything which then tells me it's anxiety and panic. I won't take meds due to bad experiences with medications. I'm working with a psychologist who is helping me understand my anxiety and panic. Try writing things down as to when it occurs, for how long, what happens and how you feel. Once you notice a pattern it may help you understand that there is nothing wrong but you are having a panic attack or have severe anxiety. You need to focus on your little one and tell yourself you are ok :) 

  • I am so sorry you are suffering so much. I think it is extremely important that you see a counselor. It does not have to be a psychiatrist. But the depth of your "issues" calls out for you to get some help.

  • I've had the same tests and have almost identical symptoms 24/7/365. I have been this way for 7 years now. Neck Pressure/Headache/Dizziness/Muscle weakness/breathing issues etc. it's a nightmare. 

  • You haven't found anything to help relieve it? Also do you have trouble sleeping? Lately I fall asleep at night and wake up feeling like I can hardly breathe and my head is so groggy, I can barely move my arms, and I have pins and needles pain all over my body. 

  • Unfortunately no I haven't found relief. If I sit in a quiet place and focus on breathing, I can get the symptoms to relax some. I go through spurts with sleeping issues. Sometimes I'll go weeks where I wake up 4-5 x per night. I always feel toxic when I wake up. 

  • Anxious2befree, I am sorry if you rely my reply was inappropriate.

    I too suffer from anxiety so I know where you're coming from

    I didn't intent to scare you at all..that was not my intention.

    The reason I wrote the above is because I see you have symptoms like mine and rather than be stressed and anxious over what could be wrong, you could request a simple blood test from young doctor, or pay privately for one...and get treatment.

    That's if you are low or deficient.

    I was merely trying to help in saying it could be this.

    If it's not, then you will find another way forward but if it is, and your anxiety prevents you from being tested then you r symptoms may worsen.

    Apologies for offending you and I wish you good health for the future. X

  • This was my first ever posting within this group and it seems I have got things wrong.

    I was trying to help.

    Any tingling and anxiety can be deficiency symptoms...that's all I was saying. If that was fixed, ones anxiety levels drop.

    Not only as metaphysically you are helping to alleviate the anxiety but also as it is a symptom and the replacement b12 will put an end to it.

    I will no longer post on here if I get attacked for trying to help and educate.

    Sorry again.

    Good luck and hope you all get well and experience peace. X

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