3 months of a nightmare — Scope | Disability forum
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3 months of a nightmare

January 2nd 2019 i woke up and it felt like something was stuck in my throat. 2 days before this i had a really nasty flu puking and all. I went to emergency had cat scans xray nithing found as time goes on my neck starts hurting also so on my own i make an app with my neurosurgeon i had back surger in 09 im thinking maybe all my issues are from my neck they did an mri c5 is bulged but doc says none of my symptoms would be from c5 by this time i have horrible pressure in my face neck throat cant even lay flat also inflamation in hands and this horrible dryness in my mouth by feb i have an app for ent by now im horribly fatigued every day same pains and on top of everything headaches now too ent finds my right ear hearing is only at 85 percent. Put a scope from my nose into my mouth nothing found i go to a neurologist by mid February they do an mri of brain ecg on head and blood work only thing found was b12 low so i finally get into my primary in March and get b12 shot finally feel slightly better after a few days decided to take a walk and all the sudden a rush of blood in my mouth feels like its coming from my nose area but to my surprise no blood in my nose i spit out a blood clot and blood for 5 minutes rush to the hospital given everything ive been thru im taking no chances and nothing ct scan says 8mm nodule in lung and some small adrenal something in my stomach. Also now to boot i am overly itchy in my hands no rash just an inner itch also itchiness in my inner ears and private parts but nothing found therr also my eyes have now become super dry and red around the eye i still have to see ent again on monday for follow up and see a pulmonary doc and do a scope down my throat.  Before all this i was an active mother of 7 wirh her own cleaning business suoer active now i can barely lift my head also on top of all this i got pregnant in January and suffered a miscarriage 6 weeks later mind u i never have had a miscarriage i have 7 healthy children.   Im on tylenol pain meds and allergy medicine for the itching also prilosec cause the docs thought maybe gerd btw meds have not changed anything also recently found out my irons low im riddled with depression and anxiety because ofthis its effected everything in my life i feel alone and feel like im knocking on deaths door i cry most of the day cause im so scared im going to die and leave my kids i dont know what to do anymore 


  • CockneyRebel
    CockneyRebel Member Posts: 5,212 Disability Gamechanger
    Hi @jenna2676 and welcome

    Thank you for joining our community, it does sound as though you are having a real bad time at the moment. it can be very scary not knowing what is happening with your body. We are not medical professional but it sounds as though you have all the medics working with you to find out what is going on.

    Some of our members may have some understanding of what you are going through and I am sure they will respond soon.
    You are not alone, you are now part of our community and we will suppport you in any way we can, even if just listening when you need to let off a bit of steam
    Be all you can be, make  every day count. Namaste
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @jenna2676 welcome to the community! 

    I am so sorry for what you've been going through in the recent months. I have experienced B12 deficiency and the symptoms I experiences were severe fatigue, breathlessness and chest pain. As @CockneyRebel said, we are not medical professionals however it does sound like your doctors and consultants are doing everything they can to find what is causing this. Have you had anymore B12 injections since the one you mentioned?
    Disability Gamechanger - 2019
  • jenna2676
    jenna2676 Member Posts: 2 Listener
    Thank you both so much for responding no i have had 1 b12 shot so far he will be giving me another one next week. It is all very scary my anxiety and depression have been getting the best of me since alll this started. Smh im just praying and hoping i feel some relief soon
  • DragonflyTV
    DragonflyTV Member Posts: 3 Listener
    Hi Jenna,
    I work for a TV company called Dragonfly and we're producing a medical series for the BBC. I think we might be able to help you find a diagnosis for your condition if you're interested?

    In this programme, we want to showcase the best, latest diagnostic medicine in Britain and to help patients who previously have not been able to find a diagnosis for their condition. The series will feature a team of leading medical specialists, from the NHS and private sector, with different specialisms, who review patients’ cases and then invite the patients to their clinics for a diagnostic assessment and testing. 

    Many thanks,

     If you’d like to find out more about what’s involved, or are potentially interested in taking part, call the team on 0207 033 2252. Alternatively you can email us at [email protected] 

    All applicants must be 18 or over.

    Dragonfly, the award-winning company behind acclaimed series such as BBC1’s Ambulance and One Born Every Minute and BBC2’s Surgeons: At The Edge of Life is making a new series bringing twelve of the UK’s sharpest medical minds and combining their expertise to transform the lives of patients who are looking for a second opinion to their medical mystery. 

    If you’d like to find out more about what’s involved, or are potentially interested in taking part, call the team on 0207 033 2252. Alternatively you can email us at [email protected]


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