Living with an Undiagnosed Illness │My 13 years of Undiagnosed Tuberculosis

[@brittanykannon2154]

I appreciate you being so open. I am struggling to find help. I actually have a diagnosis, but the doctor said she doesn’t use that test and has been blowing me off since.

[@Hypohair]

Great vid but do you think you could take down the musical score volume as I am having trouble hearing you

[@pendlelancashire]

*I don't understand why you added such loud background music . It ruined the clinical significance of the narrative and challenged concentration acuity. Very disappointing.*

[@KaseyRosewood]

I have a similar story, I've had breathing problems since I was about 15. I've been hospitalized (and almost died) multiple times but they couldn't figure out what was wrong with me so they just diagnosed me with asthma. The inhalers didn't really help and it just kept getting worse. I just was extremely exhausted all the time and would also get headaches. I kept having this happen until finally just a couple years ago. I don't have trouble breathing anymore but I still suffer from extreme exhaustion. I wish I could figure out what was/is wrong with me. I've been researching what I think it could be but haven't really done much with it lately because a lot of doctors just don't take it seriously and I know it's going to be a long ride. I also am terrified of needles. I know I need to figure out and get to the bottom of it so I can either get feeling better or be able to get on disability because I just can't function day to day like a normal person. My husband has to completely take care of me financially and I feel bad. I feel bad that I don't want to go out and do stuff together. I feel bad that I have a hard time just doing daily tasks.

[@davidglasberg746]

Good work Tilly, I thought I was the only one, 12 years, but a different type, I think we have to connect, and help raise awareness, delayed diagnosis is probably the culprit bend not being able to eradicate TB, how many people did we infect during these these years unknowingly. I would like to have contact, with as many very delayed TB diagnosis survivors to advocate

[@ishka5828]

its good to know im not the only one feeling the burning feet

[@christicyngier5988]

Me too! It’s called Erythromelalgia. Mine affects my hands, feet and even ears and nose sometimes. It’s awful

[@adambradbery1314]

I think we underestimate how many gaps there are in the medical profession's understanding of how the human body works and is affected by outside factors such as viruses or drugs. Add to that a national health service that is perennially stretched, under-funded and poorly managed and it's no surprise these slightly more complex cases get pushed off as medical mysteries. Unfortunately, I have experienced that as someone with AI but there are some highly-knowledgeable consultants in the private sector who have contemporary academic-grade knowledge who will take the time to work through the testing process logically.

[@ThatTillyRose]

It can be extremely tough when you don’t fit the medical textbook! Pleased to hear you have found some consultants who understand your AI ☺️

[@jasminevaughn5214]

Ummm did you not hear how loud the music was lol

[@Starchild329]

I’m glad I’m not the only one that couldn’t hear her for the music 🤷🏼‍♀️

[@lizzieloubee]

This is really interesting, and I'm sorry the medical profession let you down for so long. Please could you turn the music down or off, it's hard to hear you at times. Look forward to hearing more from you!

[@ThatTillyRose]

Thank you so much for watching! Yes it was quite the journey, with a few medical heroes along the way but sadly a lot of let down too! Very good advice on the music thank you! Will be sure to do that in the next video ☺️

[@suziebee2945]

Bless you I can’t believe it took 13 years I also had a bowel blockage lost 7 stone in weight, hit and cold sweats felt so ill , only found out I had tb because I was going on immune suppressants for my ra

[@Spiritbox12]

Which part of the body is the TB?

[@suziebee2945]

@@Spiritbox12 Mine is latent TB so I don’t know where it is in my body it came up on a blood test , they said I’m not contagious but it can be if my immune system is compromised, I was due to go on immune suppression drugs that’s why I was tested for it

[@aoifefenech7019]

Hey i have secondary adrenal insuffienty i was dignosed four years ago the dr spotted there was something wrong and sent me to immune dr and she did blood test and discoverd my cortisol was low

[@bluelovely1374]

Do you also have tuberculosis?

[@charlieb9144]

How do you recover from this? Hope you're feeling better

[@bridgethayden7200]

It’s to much trying to listen with the Music…..🎵 You have a lovely voice

[@RustyShakleford1]

Thank you so much for sharing babe. I was labeled delusional mentally ill because i was treating myself with antibiotics

[@mbs7078]

The music is so loud I had to turn on cc.

[@jorgen0lsen863]

music very disturbing

[@Harpreet122y]

Where is she ?now days.

[@jlemmink]

What happened to this channel? Where is Tilly?

[@Kiwi-ui3uk]

She has been in hospital very unwell.

[@RustyShakleford1]

Is she okay? Or alive any updatea? Love and healing ​@@Kiwi-ui3uk

[@KadeKurved]

this video is horrible because of the music. I MEAN...

[@RustyShakleford1]

Please tell me you sued all those doctors and hospitals that misdiagnosed you

[@Godisgoodallthetime31]

Yeah can be!

[@oeqm3260]

red dead reference

[@gabrielgarza8283]

Music drowns out your voice

[@4k-astrowrld338]

turn off the music

[@sheilamailhes3329]

I hate that background music! It's so LOUD! I can hardley here you over it. TURN it DOWN! Or turn it OFF!🤨 Was interested in what you had to say, but can't stand straing to hear you anymore. 👋