Hi,

Not received the results yet. Chased it up yesterday but the secretary dealing directly with my case is on leave until next week. However, a colleague of hers looked me up on the system and claimed a letter was drafted on the 9th August and ‘could’ be on it’s way in the post. She wasn’t allowed to read it out over the telephone to me, but said I would be referred on to a Chronic Cough Specialist and a bronchoscopy has not been requested. From that, I assume it’s not a clear-cut case and if it was an emergency, a bronchoscopy might well have been requested, but it’s all just guesswork really and I won’t count my chickens until I see the full letter.

Meanwhile, the cough is less severe but mucus production seems to be at an all time high.......sorry if you’re having your lunch whilst reading this!!

Cheers,

Dave

Received a brief letter today which stated that the CT result echoes that seem previously on the x-ray, I.e. mild bronchiectasis and basal atelectasis (probably resulting from recent respiratory infection). It also stated that blood test results weren’t yet complete but there were signs so far of Haemophilus influenzae, a type of bacteria that can cause many different kinds of infections including pneumonia. It recommends I have a vaccination.

I also received a text pointing me to a referral letter on the NHS on-line portal which stated that I have an appointment with a chronic cough specialist on 28th January 2020 (!)

Although I am obviously relieved that the CT scan seemingly hasn’t shown anything immediately life threatening such that a swift follow-up is not required, I am not going to suffer these symptoms all the way to January before I get a chance to address the problems, no way. Sorry if that sounds impatient!

So, tomorrow I will be calling the telephone number to try to bring the appointment forward.

Hope your fevers finally relent soon - try to stay positive if you can.

Hi Dave,

I'm glad they aren't overly concerned but I agree that January is a long wait!! I can only imagine how frustrating your symptoms and constant cough is! Let me know if you are able to bring it forward! 

I recieved a letter today also from heamtology stating my bloods and xray are all normal but ultrasound picked up some scaring to my left kidney. My bloods show no infection and therefore they dont know where the scaring came from as per other symtoms i had as this only explained my left flank pain and hip pain, they said my temps are caused by hormonal chages throughout the month and probabal infections ive had over the year. My chest pain are panic attacks the itching is allergies and other aches and pains including weight loss and confusion is fibromialgia. I got alot of health issues so it seems and im being discharged back to GP!!! Surley it cant be coincice i have all these conditions at the same time!

Dave I hope they call you and discuss your results properly so you can understand exactly what is going on. 

Musicismylife, Im sorry you have so much going on with no proper answer! What tests did you have done? Are you still getting all these symptoms now? 

I feel like Im getting worse. Aswell as the fevers at night Im waking up shivering constantly. I also feel cold all day and cant warm up at all! Iv been getting a few weird spots that start like hives but then turn into purple blotches under my skin. After googling this im worried sick again! Still waiting to see hemotology :( 

Apologies if you’ve stated it in a previous post, but when is your haematology appointment?

I think you need to see this specialist soon - at the very least to put your mind at ease. Sounds like you are doing all you can to solve the mystery by chasing up the medics, so I’d try to leave google alone in the meantime if you can. Don’t be surprised if you end up being referred on to another discipline though - I’ve seen two ENT guys, a Dermatologist, a Neurologist and a Respiratory Specialist so far this year. Like a giant game of medical pinball!

I went to the doctor on friday. She said she did red flag me and I should have been seen by now. She rang the booking centre and was told it was downgraded to "urgent" which means I have to be seen in 8 weeks. That was 4 weeks ago so I've 4 weeks left to wait.

She said she isnt concerned about the purple blotches as they are healing and have nearly went away. She thinks they might be bug bites. I also have to get my bloods repeated next friday. I left her appt feeling a bit better. But over the weekend I feel worse again. I woke up with a sore throat on saturday and it hurt to swallow. It's not sore today but I checked and my tonsils are swollen up, the right one more so than the left. I also think the nodes in my neck are swollen up. Now I'm really anxious again as lymphoma can be found in the tonsils. Im annoyed at myself that I didnt get the doctor to check me over, I dont know if its worth going back to her or not when I have an urgent referral already. I just dont want to wait another month like this! Everytime I sleep my temperature goes up, its driving me mad :( 

If it’s really eating at you, I would go see your GP regarding the tonsils - rather than wait a month.

Sounds like you just can’t seem to get any respite - and I can very much relate to that. Obviously, if the consecutive ailments turn out to be benign / not serious then it’s a definite blessing (especially given what some are going through), but being perennially ill is no fun really.

I am no better and I’ve had to see my GP to get my CT result explained in plain English! Follow up appointment is now 28/01/2020. Crazy really.

I'm going to wait a few days and if my tonsils dont go down I will see what she says. I would consider paying private to see ENT about my neck lumps and tonsils. Theres a clinic near me that can usually see you within a week. But I would need a referral letter from my doctor so would have to ask her if its worth doing this in the meantime while waiting to see hematology. I just dont feel comfortable waiting another month when this is already going on 7 weeks for me! 

Did your doctor explain your ct then? If your follow up is so long away then surely that means they arent concerned and you dont have anything serious going on? Were you not able to bring it forward to December?