My breathing has got worse.

[Bentleyboo]

Hi everyone, I used to be on this forum a couple of years ago but due to some bullying on another forum I suffered a mini breakdown and disappeared for a while. I'm now back but my health has got worse.

I suffer from Emphsema, Bronchietasis,Osteoarthritis, Fibromyalgia, double scoliosis and a few other health problems. I had a MRI scan before Christmas on my back after fighting to get one for 15+ years. I had MRI scan and got the results and the doc looked at me and asked how am I still walking as she reckons I need surgery on my back as it is so bad.

Anyhow I'm still waiting for a hospital appointment and nearly every morning I wake up paralysed from waist down. The other problem is I have noticed my breathing is getting worse, it's like there is no air and I'm having problems breathing. Sometimes it hurts just to breath. Someone told me it could have something to do with my back (curve at top of back) pressing on my chest.  My Emphysema  doctor won't see me as he says I should just use my inhalers and the paper bag technique.

Has anyone any advice, I'm fed up with docs not listening. It took them about 9 years to diagnosed B12 definicity,  by that time I kept falling over as I felt so weak. It was only when this new doctor did some blood tests on me that he found my B12 levels were dangerously low. 

I was diagnosed with Emphysema  in 2011 after a bout of pneumonia which the docs at first said it was a chest infection and since then my health has taken a downhill turn. 

Sorry for waffling.

[bandit2]

sounds like the dr who discovered your b-12 defficiency is who you should stick with.  There is new puffer called BREO it really helped me, I was on a cane and couldnt walk 2 feet without having to sit and its a once a day thing plus I had the ventolin if needed.  Screw the paper bag that only works for pannick attacks or anxiety not an internal problem, Id be telling him to shove the bag you jnow where lol.  I used to get b-12 shots I didnt notice a difference physically but I guess they did something, couldnt take pills they made me sick and the shots were just 1 a month, then every 2 months and so on til they stopped.

[Heidibutcher]

Sorry to hear you are struggling so much, your GP can email or contact your respiratory   consultant and insist you are seen.

The services in your area sound dreadful, find your local Healthwatch and raise your concerns to them, they will deal with you anonymously but will be able to flag up this poor practice from hospital or GP's to commissioning leads, things can get changed, remember these are our services, we need and use them!

I hope you get some help and support soon

Heidi x

[cofdrop-UK]

Hi Bentleyboo

I hate to see people getting short changed and that is exactly what your emphysema guy is doing - disgraceful.

I am so sorry you have such a lot to deal with.  If you have bronchiectasis you really need to be seeing a respiratory consultant who has a special interest in cf/bronchiectasis.  If you let us know roughly an area you have access to, we may be able to find such a consultant and you can then ask your GP to refer you.  The consultant will also be knowledgable about copd and you should be getting better treatment.

Many of us have multiple health issues and so have empathy with how hard it can be.

Don't put up with second rate so called care - you deserve better and will have to be your own advocate.  We will support you.

love cx

[Billiejean_2]

Hi BB, really sorry to hear how poorly you are at the moment. I second Bandit's suggestion that you stick with the doctor who diagnosed your B12 deficiency. If your breathing is poor then maybe a nebuliser might help you.  A good GP or Respiratory nurse could prescribe this for you and you wouldn't need to see the 'paper bag' expert. I hope you get some help soon.

[Titchy52]

Bentleyboo  sorry to hear how badly you've been treated by professionals and people who've bullied you their a great bunch on this site who will give u great advice and support best wishes .

[Hidden]

Hi the paper bag is only to be used for anxiety,  and never for lung diseases as it can be dangerous.   It sounds like the doctor is putting your symptoms down to anxiety!   This is disgusting treatment and I think you should report it.  Try PALS - google it.  x

[Hidden in reply to Hidden]

nhs.uk/chq/Pages/1082.aspx?... x

[casper99]

Hi Bentleyboo and welcome back. I too, am sorry to hear about all the health problems you are having to deal with. They would get anyone down.

I can't add anything to the excellent advice you've had off other members and I agree with them completely that you must demand to see someone who can do something to help you instead of all the fobbing off you are getting.

I also have Fibro as well as an arthritic Autoimmune disease, Gerd and Copd and I know the first two are having a massive impact on my breathing. Trying to keep active with this constant pain is wearing me down.

I hope you take the other posters advice about putting your foot down,  how your being treated just isn't on. xx

[Caspiana]

Hello. I'm sorry things aren't going so well at the moment. I can only imagine how very frustrating it is for you. I can't add anything constructive to the already great advice you've got here, but I am sending you the very best of wishes. 

Cas xx 

[fcag2001]

You sound very brave indeed. Believe in yourself  and that you have the courage and resilience ro keep going. Make sure you get the  best treatment for your health you deserve it. Hang in there and  stay strong.keep smiling it does help!

[Sheilab123]

Hi Bentley, sorry I can't help with your problems, poor you, you seem to have more than your share! Just wanted to say welcome back. Xx

[Watfordgirl]

I'm so sorry things are so bad for you. It must be frustrating and frightening, Can't add to the advice and suggestions already given but do hope they've helped. Hoping that you're heard and helped by the doctors with the problems you're struggling with.

Sue x

[tamariki]

Both my grand daughter have scoliosis. One of the had an operation when she was 15 and they put four steel rods to her spine, She grew about 6 inches. The other one has not been so lucky, since her spine is affected near her neck, and th specialist is unwilling to take a risk operating, since he could end up crippling her. She does have some difficulty breathing, since has lungs are being constricted by  her spinal illness.

[Jamesmum]

Don't be silly... That's what we are all here for. My son has CF and 4 other diseases in his lungs, and I only cope by reading how every one gets on with their lives. Just hope you get the help you need a d you are feeling better soon xx

[Caspiana in reply to Jamesmum]

This post is four years old. I hope Bentlyboo is doing well. xx👋