As hunter had said to let you know. ....

[Notdiagnosed]

Well I eventually got my discharge letter from our haematology department. It stated my bloods were high for a long time most likely infection and he would be happy to see me again if I developed any other symptoms or my platelets went above 650. (Not the 450 stated on the WHO for et).

In December I was fed up with my coughing after covid in July and my feeling tired still so I went to see my gp. First time since the December beforehand in 2021. I had to have a bp check which I hadnt been for but was asked a few weeks before.

During this appointment she did my oxygen because I was still breathless and it was fine. And she asked for a chest xray and sputum test. And I was weighed. I had lost over 5kg since August without trying. I didn't know because I have no scales. I weighed 49kg. Before this I used a scale when we went to get a new car seat for my granddaughter and that was August and I was 54.6kg. She said they are going to monitor my weight and she ordered blood tests.

My chest xray came back normal thankfully. My bloods were same as July ones tbh. So just under 400 which was good.

My sputum test showed a bacterial infection called moraxella catarrhalis. So I have had a high dose course of clarithromycin although never heard of it but ir seems hard to rid

I then went to see a healthcare assistant about my bp and it was slightly high so I was asked for 7 days readings. Also I had a urine test and this has to be repeated as first time ever I have got high albumin creatine ratio.

Then on Xmas eve I had a huge 4in bruise appear at the top of my leg near my groin unexplained. I'm glad now I never went on to take aspirin as I had said. I did however have one that day and after trying to get in the doctors after Xmas and I couldn't I was told to see the pharmacist. He said I had done the right thing then just in case. By this time I had developed more bruising down my muscle on my thigh. It was getting better so I was told to keep an eye.

Then 3 days ago after still coughing my guts up I suddenly developed a bright red rash like blothes on both shoulders. The crease of my neck. Under both breasts and on my chest and back. It was patches of red like sunburn but by morning it was gone nearly. We photographed it all.

So I doubt my symptoms are anything that would be significant to the haematologist but just letting you know my journey.

Hope you all have a good new year.

[Winchie]

I am very sorry to hear of all your suffering. I hope you are feeling better now and will improve and get back to normal soon.

[Notdiagnosed in reply to Winchie]

I am not really suffering too much but just confused as to what "develop other symptoms" means. I have weight loss now and a bacteria that adults don't usually get unless immune problems from what I read. I had again unexplained bruising and red patches. But I don't know what symptoms are what. I now have a high albumin for some reason? And because of others suffering far worse we cannot get to see doctors etc. But I'm OK I think. Just hopefully will all go soon.

[Winchie in reply to Notdiagnosed]

So sorry that you have to wait to see a doctor,

[hunter5582]

Glad you decided to update the forum. Sorry to hear that the saga continues.

it sounds like you are starting to get some answers. The bacterial infection is doubtless part of the issue. It seems like there may be more to what is going on than just the single issue. It may take some medical detective work to get to the bottom of all of the symptoms. There are a number of reasons why someone can get unexplained bruising and breathlessness. I expect the future will hold visits with multiple specialists until you get to the bottom of things. I think your thought about checking into the immune system makes sense. It at least needs to be ruled out. You may need consult with a pulmonologist and cardiologist too.

Hopefully you have a GP who is really on the ball. That doc will be critical in helping you sort out what specialists you need to consult with. My only other thought would be to consider a nutritional analysis. This gets ignored all too often. When my Integrative Medicine doc ran a complete analsysis, I was deficient in Vit. B/folate, Vit D, and magnesium, and had elevated levels of mercury. These tests are easy to run and might be part of the picture.

Wishing you all the best as you move forward.

[Notdiagnosed in reply to hunter5582]

Hi hunter. Hope you are keeping OK.

I had my b12 folate and iron studies done before Xmas. They were fine except something transferrin was a little under.

I have acrually seen a doctor last week eventually. I had really high BP again. I showed her my bruising picture and my rash of sunburn looking skin but only top half of body and she ordered more blood tests. And clotting ones too.

Blood tests came back Monday and apparently clotting is raised. Aptt ratio is over but INR normal. Don't really understand but I know it happened when they last did clotting tests in 2008 and the same thing. I then had a lupus anticoagulant test but can't see results online.

During the blood test the man asked if my veins usually collapse. I said they didn't and I was always a bleeder. In fact opposite and my flow was excellent but it stopped and he yanked it more deep into the vein saying my vein had collapsed. Don't really know what that meant either. I hope he told my gp!!!!!

My platelets and wbc are back up too ( out of range wbc but mild and platelets 438) but my haematologist will not see me again (although NEVER seen me anyway but put on my letters ....seen on clinic!!) unless they reach at least 650. Or 600. He says mutations rule out all et and pv. So I must have another infection although only just taken powerful antibiotics called clarithromycin.

I have now got over 20 consultations with my gp practice on record since 2nd December but only seen my gp TWICE. the consultations are each blood test seperate (and most are satisfactory ...no action) but I will look like I am costing them thousands. I really am not.

I'll get struck off soon for cost.

Like I say out of 20 odd consultations I have actually been twice face to face and no telephone consultations whatsoever. In fact I have a telephone consultation next week.

[hunter5582 in reply to Notdiagnosed]

I hope that at some point you will be able to change your screen name from Notdiagnosed to Finallyfigureditout. I doubt it is going to get figured out in the absence of face-to-face visits. There are things the care team can better assess in person. It is also more humanizing to see the patient in person. It can certainly be more reassuring for the patient.

It may well be that you do not have a MPN, however, the absence of the three driver mutations does not confirm this. That would require a bone marrow biopsy to rule out a triple-negative MPN. Having said that, there most certainly could be a secondary cause for the elevations in blood cell numbers you have been seeing.

You have been looking for an answer to the various symptoms you are experiencing for some time now. It may well be that what you are experiencing is infectious, autoimmune, or something else entirely. It seems likely that the level of stress you experience plays a role as well. As a side bar note, the skin is our largest organ. Skin symptoms are one of the most common physical manifestations of stress. It seems possible that your experience is a result of multiple factors. It may take a collaborative team to sort it out.

Hope your persistence in seeking an answer is successful.

[Notdiagnosed in reply to hunter5582]

Thanks hunter. Our health system here is in pieces, to be honest. Far worse off than me.

And I really dont think stress rash. I think it was a side effect from antibiotics maybe. I was once asked by max facial if I'm allergic to antibiotics. I am not worrying particularly. I am more frustrated.

And the recent bruise was not hot or red or swollen or hurt like my hand went. It was just a huge purple bruise probably into the muscle. Just unexplainable.

[hunter5582 in reply to Notdiagnosed]

Sorry to know that the healthcare system is in such disarray. Sadly, you are far from the only person who is experiencing that these days. It is even worse when what you really need is a thorough assessment by a collaborative team of specialists. Also to be seen in person for a more thorough exam.

It is quite understandable that you are frustrated. It would be tempting to give up and just plod along. Suggest taking a page out of Winston Churchill's playbook and "Never Surrender!"

There is an answer to what is going on. Hope you find it soon.

[Otterfield in reply to hunter5582]

There is certainly a shortage of resources for the NHS but I wouldn't describe it as being "in disarray." I have nothing but praise for the standard of care I have received.

[friendofpiglet in reply to Otterfield]

I quite agree. It is not for those who have no experience of, or reliance on, our NHS to level criticism - we can do that ourselves should we feel it appropriate.

[Notdiagnosed in reply to Otterfield]

Well maybe there are lots who think the nhs is in disarray. Ask the nurses and ambulance workers who work in it!!!!!

I'm glad that you had such great care though. Things are difficult I would say personally.

[Otterfield in reply to Notdiagnosed]

I speak from my own perspective as an extremely grateful and well cared for patient. I understand that your experience has not been so good. As a health service though, the NHS is sound and the problems you mention are caused by chronic underfunding by this government. Given that underfunding, it is amazing that the NHS achieves what it does and that those who care for us are so committed to our wellbeing.

[Notdiagnosed in reply to Otterfield]

I am grateful to "care" received from the nhs. I had plenty back in the day but things have deteriorated and that's a fact. And that's my personal perspective. And I dread to think what "care" my grandchildren will get. There are people that abuse the nhs but most don't. The nhs does need an overall from what it is today regardless of money. Money won't solve everything. Its how the money is spent that needs to be changed maybe. Enough goes into it via tax and national insurance.

I really dont want to get into a debate here. Like I say. Glad you personally get a good service from the nhs. Lots dont.

[Otterfield in reply to Notdiagnosed]

A debate? I definitely wouldn't have the energy for that! Always happy to amicably disagree 🙂