How bad does it have to get?

[MaggieSylvie]

Hi everyone,

My haematology appointment for yesterday was cancelled but on Monday I went ahead and did my blood tests, including an extra one for my GP. Last week I joined the Patients' Portal for my hospital and was able to get my results online today. Haem is down to 83 and platelets up to 620 - quite a jump from last time, probably due to the stress and pain I've been under. I am just on aspirin and wondering whether I am approaching a level where I will be given some medication. I hope not but it does look as if I'm on the slippery slope!

On Tuesday I visited a chiropractor and she has requested the discs from the MRI scans, as she won't do anything hands-on until she knows exactly what we are dealing with. (She cured my partner's coccyx problem on the second visit!) Getting the discs can take four weeks.

I also have to wait another four weeks for my phone appointment with the new haematologist; I haven't yet received a new blood test form. It does look as if the four (so far) compression fractures in my spine may be caused by osteoporosis, which can be due to the bone marrow problem. If I'd only known I was at risk I wouldn't have done some of the things I did, although when I had my fall, I didn't know I had MDS/MPN or I would have outright refused to put myself at risk in a slippery garden.

My GP will see that the blood tests she requested show normal results. I love Patient Portal! No more being kept in the dark.

[hunter5582]

Glad to hear you accessed the patient portal. Access to your own records is very helpful and a fundamental right for all patients. Sorry to hear it will take so long to get the discs on your MRI. I always walk out of the facility with them. They just burn the discs right after I do the MRI. Wait time = 10 minutes. If I don't get the discs then, it might take 24 hours to get them. If I wait for the mail, maybe a week.

Regrading the platelet levels, I would not sweat it too much. Platelet levels can vary by as much as 100K in one day. This is normal variation. It is the trend over time that matters. Also note that there is not a linear relationship in risk of thrombosis whether your platelets are in the 500s or 600s. It does not work that way. Hopefully your new hematologist will be a MPN-specialist and can give you a better explanation of how thrombosis works.

Not surprised that you experience osteoarthritis. I do too. MPNs are at the core inflammatory disorders. The excess production of inflammatory cytokines puts us at risk for a range if inflammatory disorders. Hopefully this will be another thing your new hematologist can help you with.

ALl the best to you.

[MaggieSylvie in reply to hunter5582]

Yes, I have OA as well but that was diagnosed a year or two before the MDS/MPN. I have appointments three to four months apart and I can see that, while the other bloods are normal, the haem and platelets are following their opposite trends.

The last time I complained of pain (it was the OA as it happened), my haem said "What pain?" as if I shouldn't have any. She has been quite holistic on the whole but I did wonder at the time if she thought that someone with blood disorders couldn't have any other conditions, or that I was blaming the pain on the condition. Well, what do I know?

It's now whether I have osteoporosis or not that is the next question. It worries me slightly that thrombocytosis is what everyone is going on about, when I also have immature red blood cells, and when diagnosed, I was only given information about that, so surely, that is of more concern.

Good to hear from you again, Hunter. I hope you are well.

[hunter5582 in reply to MaggieSylvie]

I don't recall if your hemo-doc is a MPN Specialist. I sure hope so.

I do think that osteoarthritis is just one element of the inflammatory conditions those of us with deregulation of the JAK-STAT pathway experience. Along with spinal deterioration, it is the most significant source of chronic pain I experience. I am lucky that the Curcumin does such a good job managing the inflammation/pain.

I am doing OK. Just had a follow-up MRI of the brain and everything looks good. Continued healing from the surgery is evident. Have had no recurrence of the visual migraines/palinopsia since September. Hopefully there will not be any more incidents. Getting fitted for prisms for my glasses tomorrow which will help with the convergence insufficiency.

Hope you get the various blood anomalies worked out. Likewise the other issues.

[MaggieSylvie in reply to hunter5582]

Good morning, Hunter,

I don't really know whether my hemo doc is a MDS/MPN specialist. All I know is that I go to the Macmillan Department for my appointments, and as I am only on aspirin, I think I would be laughed at if I asked that question. I am JAK2 negative -they haven't found any mutations at all, so don't know why I have cancerous red blood cells and proliferative platelets. OA preceded the blood problems and had probably been coming on for some time, likewise, the right knee isn't all that great either, but this latest thing with the compressed spinal fractures is life-changing, and last night I cracked a rib or did something to myself, sending more pain round my body. I don't know whether I should see someone about it. I was only bending over the arm chair to pick up a wire that had got stuck in the castor, and I felt something "go".

Apart from last week, when I compensated by putting weight on my knee to chuck coal on the burner, it is giving me very few problems but it has been far worse in the past.

I am glad to hear you are recovering well from your op - heaven knows you've been through enough, and I hope the prisms do what they're designed to do. I don't know what they are but assume they are specialist lenses. By the time you get this, you will have come home with them.

[hunter5582 in reply to MaggieSylvie]

I would think that the Macmillan Department would have MPN experts, but just don't know enough about your healthcare system to say. Perhaps others on the forum know. I will say this, no one should laugh at you for asking about their expertise. MPNs are rare disorders. MPN/MDS overlap is even more rare. it is important to always remember that the doctors work for you and at your discretion. It is your decision about who you allow on your treatment team. You have every right to ask the docs about their own experience and expertise. Any docs that get their knockers in a twist at being asked should be dismissed. They are putting their ego ahead of your care needs. Given how complex your case is, you need the top-of-the-line MPN/MDS experts involved. It may be time for a second opinion. If I recall correctly, your are near Guys, which certainly has advanced expertise.

Do bear in mind that the blood problems go beyond platelets and erythrocytes. The JAK-STAT pathway is involved in a lot of body processes - hematopoiesis, immune response, hormone production, tumorigenesis, apoptosis and more. Then we also have truly unrelated issues as well. It can be quite difficult to sort it all out. Can definitely sympathize with the sore know. I have a complex meniscal tear that need attending to. I will get to it when I can.

The update on the prisms (which are special lenses) is that the Orthoptist want to try exercises first. We will see if that works.

All the best my friend.

[MaggieSylvie in reply to hunter5582]

Good to hear from you again, Hunter.

You are right about the rarity angle of all this, and I don't have JAK2 and the hematopoiesis hormone is working apparently. My original consultant is still sending letters but she is no longer on the team list, except there is someone else with the same Chinese surname, and there are now two other doctors with the same surname as mine on the team, one of which I am due to speak to in January. I am not near Guys except as the crow flies. I would have to drive for half an hour, park and get the train into London and then a tube I assume, and I wouldn't know how to get an appointment at a hospital that is outside my catchment area. I understand it is easy enough if you live in London. You are much more knowledgeable about all this than I am. I only know about erythropoesis because before I was diagnosed, a nurse said one of the treatments could be an injection of it, but it is not necessary. To be honest, if it weren't for the lack of energy, fatigue and breathlessness, all of which are increasing, I wouldn't believe there was anything wrong with me!

Sorry you've been given exercises. Just another thing you've got to remember to do every day. And the torn meniscus - it's unfair that you have to put up with the pain while some people go out and pretend Covid doesn't exist so that we end up with hospitals full of sick covid patients. Let's hope the vaccinations have the desired effect. I suppose we will all be on the shelf until the new year, so all the best to you, too, my friend.

[hunter5582 in reply to MaggieSylvie]

I actually have to travel about 2 hours to see the MPN Specialist at Johns Hopkins in Baltimore. That is why I have a local hematologist who is a great doc, but not a MPN expert. The two docs are my hematology team. The local doc handles all the on-going care needs. The MPN specialist provides expert guidance. I make all the decisions (note Team Captain status). This approach works great for me.

Do keep at getting things sorted out. Much harder with all this COVID craziness. The silver lining is how much more available tele-video sessions are. I do a lot of my sessions this way now. It really is way better than a phone consult. Perhaps that would be an option to get an expert second opinion.

I am OK with the eye exercises. If it fixes the problem than it will be worth it. It will give me the chance to only need glasses for reading once I get the cataract surgery. That would be great.

I sure am hoping the vaccines will roll out in the next couple of days. I will not be first phase but maybe in the second wave. We will just have to see. I will get vaccinated the first chance I get.

All the best.

[MaggieSylvie in reply to hunter5582]

It would be too much walking for me. Addenbrookes would be closer, but the carpark is expensive and last time I was there I got lost, which is horrendous when you have OA in the knee. It's much better now, but then, it was torture, dark and raining, with no-one around.

There is some doubt as to when MDS/MPN patients can get vaccinated due to the uncertainty of our condition and how we might respond. But it can't be too far away.

I will do my best to find out how qualified my haem team is.

Kind regards.

We are not being offered video sessions