The joy of the unclear diagnosis 😂

[saltyskies]

This is a verrrry long post!! If anyone actually reads to the end you have my full respect

I’m a returning member to the forum. I used to be active when I was being treated for severe asthma. I used to routinely end up in hospital for basic chest infections, and struggled with chest aching and tightness. My main symptoms are general aches (like having a cold), sinus issues, aching chest, a crackly sometimes squeaky patch in my lower right lobe (which has reduced air entry in general, and then the popping etc. happens usually when I’m laid down). I don’t cough much and if I do it’s generally dry but when I’m consistent with my lung clearance techniques it does make a noticeable difference.

I’m 24 years old now. For the past few years my regimen has been as follows:

INHALERS

Seretide 125/25 (could probably reduce to 50/25 to be honest, the long acting beta agonist has been the most useful bit of this)

Atrovent inhaler

TABLETS

NACSYS 600

OTHER

Hypertonic saline nasal spray

Hypertonic saline nebuliser solution

Aerobika device

Antibiotics as needed

and this has been going pretty well. I still have symptoms and am hoping to get some clarity on this when I finally see my new respiratory team, but that’s where I’m at. Montelukast was useful during spring/summer/early autumn and I’ll probably stick with that for weed pollen allergy (confirmed on skin prick) but I haven’t used that this year because I was at sea 🌊

My other issues are confirmed Adrenal Insufficiency, thought to be from steroids I needed to get my lungs on track to start with, however there’s a slight question mark for a contributing factor which I’ll come onto in a sec. I’m on hydrocortisone for this. I’ve had digestive issues for some years where — TMI alert — I would be passing stool several times a day, and used to have very bad radiating épigastrique pain especially at night: the pandemic has thrown so many things into disarray but just before it, a gastroenterologist suggested just trying pancreatic enzymes just in case, even though relevant tests didn’t show anything, because I’ve had some pancreatitis-like episodes and symptoms (despite being a non-drinker). I actually tried them accidentally to start with, as a related digestive enzyme preparation containing lipase, protease, and amylase was included with another supplement that I was taking as I got the wrong one sent to me and the change was night and day. I remember being like « what is going on with my vitamin D this month, holy shit » and then checking the packet and realising it wasn’t just Vitamin D. I’ve been taking a lipase-protease-amylase preparation since then with all meals and snacks and I still have some issues but the change is unbelievable and really has made quite a difference to my quality of life and the amount of toilet paper my family has to buy 😂 but I haven’t been able to get a gastroenterologist appointment yet as they are still horribly backed up (lmao) from the main part of the pandemic.

Other symptoms include: episodes of joint warmth + swelling + aching, usually accompanied by general infective symptoms but negative for signs of an actual infection; mild psoriasis-like skin issues, and some other stuff. I lost my mum to Covid in late 2020 but she had a possible diagnosis of Hereditary Angioedema due to a positive C4 test but that can actually apply to a number of conditions: my sister has erythromelalgia with unknown cause and hasn’t had a C4 test. My mum also had a diagnosis of eosinophilic bronchitis without asthma, only diagnosed when she finally had a bronchoscopy, but even the hospital that diagnosed that (which is who I’m supposed to be seen by) said they weren’t entirely certain but it was the closest they could get and the treatment for it worked magically for her.

I’ve had sputum samples and nasal swabs in the past (but not for some years) which showed varying amounts of Pseudomonas aeruginosa (which appeared to clear with Tazocin, I got hives with ciprofloxacin so although I would like to review that, I might still be allergic to it which is a pain), Staphylococcus aureus, and Proteus mirabilis. I have had chest scans which were clear (as they always were for my mum), but no bronchoscopy. I have had a sweat test and basic CF gene panel: the sweat test was actually low, the gene panel turned up nothing, but I do have two CFTR variations of unknown clinical significance, one from my dad’s side and one either novel or from my mum’s side. My sister and dad both have a single deltaF508 mutation but no apparent symptoms. I also had a nasal nitric oxide test which was low in one nostril and within range in the other.

It’s all a bit of a pain in the tits but even more so as I’m trying to forge a career for myself at sea! I’ve been training on a tall ship since April, with a c ou ple of months off between sea time periods, and it’s been a real experience. It has been life changing and fantastic and at times just awful, but all that has done is further cemented in me that this is what I want to di with my life and that I can hack it, even at its worst, and certainly at its best. I had a seafarers medical examination and was given the temporary category of ‘unfit for sea service’, which as soon as I have been seen by respiratory can be upgraded to ‘UK coastal waters only’. After that, the doctor who actually did the examination has himself recommended I appeal that because despite everything, the actual risk of a medical emergency is not thought to be significantly greater than that of any other seafarer, and I know my conditions very well and am competent in managing t’ them independently. I have put a lot of work into the information I have provided and clearly know my stuff. The two specialists i currently have letters from for this agree, so the doctor who did the examination believes I would have a good case to take to the Maritime and Coastguards Agency for consideration of my specific circumstances. After all, in America, a young man who was diagnosed with Type 1 Diabetes during his Air Force training penned a very well written and researched appeal backed by evidence he found and by his doctors, and was allowed to continue his training and is now a qualified USAF officer. The MCA aren’t the PIPS department and it’s not impossible I o could get an unrestricted certificate.

For now, I’m just doing what I can do and making the most of life. I have an Instagram account if anyone is interested in following my journey!

[Caspiana]

I must admit there is much in your post that is difficult for me to grasp however, I wish you well in your endeavours to have a career at sea. Very best wishes. 😊👋

[Homely2]

A very impressive post.What I take from it is the importance of understanding your medical condition and learning to live with it.

You could have ended your list of conditions with something saying that you cannot do much. However instead you are still fighting to achieve what you want to do, and you will achieve it.

I want to be able to run a kilometre, then I want to run five kilometres and then ten. I will then get back to munro bagging. Just like you I will do this by understanding and living with my condition.

Thank you.

[MoyB]

Wow! What a lot of things you have to consider. I don't honestly understand most of the medical stuff you've written but your absolute determination shines through it all so I wish you well with your endeavour.Tbh, you wouldn't get me on a tall ship for all the tea in China, but if that's what you want to do, fight your corner with everything you've got and get out on that water!

I wish you every success!

Let us know how you get on, won't you?

Happy New year to you! Xx Moy

[helenlw7]

Wow. That’s one impressive post. You clearly know everything there is to know about your illnesses, and that is very important.

There’s a new pharmacist at my doctor’s surgery, and my medication review is like an episode of Mastermind. He expects you to know about every medication you take, 23 in my case, which condition it’s for, what it does to your body and what side effects, if any, you have!

I wish you well in your career on the tall ships. They are beautiful to see.

[Zero02]

Wow, I’m filled with admiration for you, go girl x

[katieoxo60]

Hello saltyskies, think you have a good grasp on your own illness and how to control it and its good that you still want to go for your aims in life, its about convincing employers that you are in control of the illness and hope to give them good service within your capabilities speaking from experience its an ongoing skill you have to learn convincing employers to change their outlook on what disabled are capable of and its a proven factor they have less time of work for illness. Good luck for the new year

[Morrison10]

hi, yes that’s long post, interesting although must admit don’t understand most of it. It’s good that you have some progress with identifying issues and treatment, long may it continue. Take it you are male, that will make it easier to work on tall ship. Best wishes for good progress and we look forward to your ongoing posts.

[SORRELHIPPO]

Well done you, and itis you taking the risk, so should be your decision. I do understand the buying of the loo paper issue as I have Crohn's and the amount of packs of 9 I can go through is wonderful.