Still here. Still suffering

[Tammoth]

I can't believe I'm 3 months in from the start of my symptoms and I am still no better! And still got a 2 month wait for my hospital appointment.

Quick recap:

- 3 courses of pred during Dec and Jan.

- 1 month of montelukast during Jan

- gradual increase from becotide to fostair 100 and now been on fostair 200 for 6 weeks

- no cold or pleghm

- no wheeze

-stable peak flow

- almost constant feeling of breathing through a straw and a tight chest

- unable to shower/bath without triggering symptoms

-unable to go outside without triggering symptoms

- barely getting 4 hours sleep a night

-no obvious acid reflux symptoms

So what else has happened since my last post:

- blood test reveals I may have hyperthyroidism

- blood test revealed I had high anti smooth muscle antibody which apparently means Ive had a nasty virus (no symptoms other than tight chest)

- lung function test is normal and shows ventolin doesn't have much effect (no shit Sherlock!)

- symptoms temporarily eased for a few days but then came back with a vengeance even though my blood test for my lover has largely returned to normal

My asthma nurse and GP have now said that I clearly had a virus and that my lungs are sensitive and will take time to heal. They've advised I just continue taking my inhalers and wait for my hospital appointment on 28th May and they have nothing else to offer me and don't want to review me again.

I am concerned though:

a) because I am getting no better, if anything my symptoms are changing and feel even less "typical' not no less horrible

b) I am taking a ton of inhaler (4-10times a day easy)

C) my symptoms don't seem to be standard for asthma or responding as normal

D) I am concerned about long term damage due to meds and symptoms. my heart rate feels increased a lot of the day due to a mix of inhalers and anxiety

E) my quality of life is practically nil and my work is really suffering. I will probably face disciplinary if I cant get a hold of my symptoms.

I want to go back to my GP and demand they come up with an action plan to get me to my hospital appointment. I also want them to consider that maybe asthma isn't the entire issue here? Or even see if my appointment can be brought forward? Maybe I should have a chest scan?

Am I being unreasonable? Or even going crazy?

What else could the problem be?

[Tryphena134]

If you have a hospital appointment for end of May you could try ringing to see if there is an earlier one available. Failing that if you can manage it try and see a private consultant. Have a look online and see if there is a consultant within your area who works privately and within NHS, ideally at hospital where you have the appointment. I experienced similar frustrations with my local practice and in desperation went privately end of January. The consultant was brilliant, I saw him within 3 days, and I have seen him at local hospital now and had a CT scan yesterday on NHS. It will cost you a few hundred pounds and in an ideal world shouldn’t be necessary to pay. The referral system is very inflexible to patients but good consultants seem to have discretion to expedite urgent cases Good luck

[strongmouse]

I suggest that you speak to one of the Asthma UK nurses on the helpline and talk it through with them. They are open Monday to Friday.

[clareasthma]

After bad asthma attack a month ago I ended up in A&E and my CTcscan and other bloods got done (I'd been waiting a long time), and although didn't get the best of care, I got into the system more & got fast tracked for my lung function and allergy tests. I'm not saying use this route deliberately but I've been told that if I'm that bad when away (I travel a bit), then go to A&E.

You sound like you need some acceleration of appointment and if the clinic can't help, I'd also suggest spend the money on private referral.

[Tammoth]

Hi all.

So I went private and unfortunately didn't get anywhere

Again because my symptoms are "mild" and there's no wheezing or obvious sign of damage, i.e crackling, then he wasn't worried as I am not going to die....Suggested I wait for my NHS appointment rather than spending thousands of pounds privately and potentially find nothing and the flare eventually calm down.

I am pretty gutted to say the least. He is however writing to my GP to request allergy tests are done and another review of my meds so I am hoping once this letter has been received I can use it to put a bit of pressure on the GP to expedite either my referral or some form of scan.

I have been to a&e previously and had the same issue. My symptoms are constant and frustrating but not serious enough for anything to be done about them.

Looks likely I am going to have to continuously take my inhaler until either my hospital appointment, I end up being fully hospitalised or I have a nervous breakdown.

Great....