Anybody out there still getting diagnosed?

[fgo96]

Hi! I am still getting diagnosed. I have my doctors appointment on tuesday, where I'll find out if I really have an MPN or not. However, I've been dealing with a lot of symptoms for over a year and I just really want something to come out on the tests they did because I really feel desperate. I've had severe fatigue, headaches and migraines, dizziness, blurred vision, tinnitus, tremors and night sweats and I am sick of nothing coming out in tests other than slightly high leucocytes and thrombocytes... would love to talk to someone going through the same situation or who went through the same situation. 🥺😇

[MissLesley13]

Hi . I think a lot of people have different symptoms at the beginning. I had and still have really bad fatigue. The odd headache but I had diarrhoea for 3 months and lost weight. After different tests and a bit of monitoring that's when they found out I had an MPN. I hope you do find out soon though as the waiting and not knowing is awful. X

[nellietheelephamt]

I was diagnosed with erythrocytosis about 15 years ago then "lost" from the system. Two years ago I become really poorly but even after extensive tests repeated several times I still have no formal diagnosis. Because of the issues I have with my local hospital I am going private and will see an MPN specialist in December.

Going private to see an MPN specialist might be a path for you to consider?

Good luck.

[fgo96 in reply to nellietheelephamt]

Thanks! Yeah, I will see how it goes tomorrow and see if they find something. With some luck a mutation comes out and I get a diagnosis (or at least the beginning of one). We'll see. I'll keep you guys updated. 😁

[RoundTheWorld]

May be worth mentioning that the counts with MPNs (even with symptoms) aren’t always massively high - an upwards trend over time can be more of an indicator. If possible do get the jak2 test done as that usually helps clarify things.

[Amethist]

I assume you’ve already had some basic blood tests? Did they by any chance also test your vitamin levels iron panel, thyroid hormones?

If not I would definitely push for these so you have better clarity on what may or may not be causing your symptoms.

For me it was Vit B12 , even though the test results showed I was in range albeit towards the lower end. I was also officially deficient in vit D, and as every cell in the body has a receptor for this very important vit ( actually it’s a hormone but misnamed ) it’s clearly important in optimal health.

I had a lot of similar symptoms to you but they all went with correcting my B12 deficiency.

Bear in mind optimal levels do not always correspond to the ranges used by health professionals, so keep an open mind. It’s important to always get the ref ranges with all blood tests and do some of your own research.

Look at your diet too.

Hope you get some answers soon!

[fgo96 in reply to Amethist]

Thanks! Yeah, they checked all that already and everything was great, so that can't be it. But thanks for your comment! I agree that those things are important for the body!

[Amethist in reply to fgo96]

Then I would strongly recommend that, if you do turn out to have an MPN, that you have a referral to an MPN specialist, not just a regular haematologist.

[TTA_]

You are so young. And health care tends to be dismissive with diffuse symptoms in young people. I also had similar symptoms for years and no diagnosis, as apparently I was deemed "young and healthy."I had slightly elevated thrombocytes since at least late adolescence. No one ever bothered to investigate that until when I insisted for this to be investigated in my mid 30s. I used to have bone pain when tired and to get tired and need rest more often than others around me, as tiredness came with pain. I was put to take iron on repeat, but my thrombocytes remained high.

The only reason for which I have a diagnosis is because I got infected with SARS-COV2 in early 2020, I didn't recover from that infection, and a GP took pity on me and pushed hematology to investigate the cause of my abnormal blood tests.

Given how young you are, insist for a full genetic test panel for MPNs, including non-canonical mutations. So that you avoid a triple-negative MPN diagnosis (meaning that you do not have a canonical JAK2, CALR or MPL mutation, but you might have a non-canonical mutation the test did not look for).

I was lucky the genetic test I had included these non-canonical mutations and I was diagnosed with a rare germline MPL mutation.

I hope you get a good medical team that can help you with your diagnosis.

Solidarity 🌷

[nellietheelephamt in reply to TTA_]

Very interesting that you didn't recover from COVID. I had erythrocytosis until my COVID infection but since then have had anaemia. I have been told by several medical people there is no link between COVID and blood issues

[TTA_ in reply to nellietheelephamt]

There are studies on how SARS-COV2 infections can create hematological issues.

One of the most problematic aspects of Covid-19 is excessive coagulation. This is mainly linked to the immune response to the virus and the way the virus itself can affect blood vessels, but not only.

The study below offers a good explanation:

nature.com/articles/s41577-...

Mode recent focus is on the impact the virus can have on the bone marrow itself.

"Infection with the SARS-CoV-2 virus is accompanied by alterations such as single-line cytopenia, pancytopenia, hemophagocytosis, and BM necrosis. The presence of factors such as cytokine release syndrome, the direct effect of the virus on cells through different receptors, and the side effects of current treatments such as corticosteroids are some of the important mechanisms in the occurrence of these alterations.

To our knowledge, this review is the first study to comprehensively investigate BM alterations caused by SAR-CoV-2 virus infection. The available findings show that the significant impact of this viral infection on blood cells and the clinical consequences resulting from them are deeper than previously thought and it may be rooted in the changes that the virus causes in the BM of patients."

sciencedirect.com/science/a...

I hope you can find competent physicians to help you with your complex issues.

Anemia post-Covid is not rare.

pmc.ncbi.nlm.nih.gov/articl...

[nellietheelephamt in reply to TTA_]

Thank you. This is an eye opener as I have been told by 3 different physicians that COVID has no effect on bone marrow and any blood issues are soon resolved.

[TTA_ in reply to nellietheelephamt]

Not all practitioners are up to date with science. Many stopped reading scientific literature once they got their specialisation. Others are driven by ideology or simply do not like it when the patient has medical knowledge, so they might answer in that vein. A cardiologist I saw in the past was swearing Covid-19 does not give cardiovascular issues, not even in the people in the ICU. 🤦‍♀️ There are thousands of studies on SARS-COV2 infections and cardiovascular issues following these infections. People with cardiovascular problems are a risk group regarding Covid. They have poor health outcomes if infected. But that doctor, in my case, hated educated female patients (hate being the word they used), and their answer was tailored to say the exact opposite.

[Threelions]

I was pretty much exactly the same as you prior to diagnosis. ET J2+.

Things got much better when I started to take Peg.

[fgo96]

Ok, sadly my meeting with the hematologist got moved to the 21st of november because they don't have my blood results yet and I have a trip planed from the 6th to the 20th... so we'll see how it all turns out when I get back here. I'll keep you updated

[nellietheelephamt in reply to fgo96]

So sorry for the delay. How frustrating for you. Mind I have had appointments cancelled after booking in at the clinic desk.