question about meds/dizziness

[Bears23]

I am new to this forum. ET, jak 2 positive. Wondering if anyone had issues with their eyes (feels as if they don’t move together, which causes dizziness). If so, did treatment help? My doctor is considering to start treatment (meds), my platelets are only 600, but just curious if anyone experienced this?

[socrates_8]

Hey Bears ...

Firstly, welcome to the Forum, it is undoubtedly the best place to be to help during this part of your MPN journey, in my view...

I don't wish to alarm you in any way, however, problems w/ vision for me were a sign/symptom of having a TIA, (minor brain stroke). People do often recover from these short-lived events (no pun intended).

However, your platelets are not too high at the present either, but that might not mean a great deal... (?)

What does your medical team have to say about all of this etc? Do they know?

Perhaps it's worth contacting them and running a few simple tests, just to be safe etc...?

Best wishes and do let us know how things go...

Steven

(Sydney)

[Bears23 in reply to socrates_8]

Thanks for taking the time to respond. When you had your TIA; were you already on meds? I also had an incident months ago, doctors weren’t sure if I had a TIA, ran tests for stroke, but came back negative. But, since that day I have issues with my eyes.

[Mazcd Partner MPNVoice]

Hello Bears23 and welcome to our forum. Treatment can help alleviate the symptoms for many people, so it might help you. Have you had your eyes tested recently, some people do find that their vision deteriorates, so it is worth getting a check up with an optician. Kind regards, Maz

[Bears23 in reply to Mazcd]

Thanks, I’ve seen numerous doctors in regard to an incident I had a few months ago (optometrist, ophthalmologist, neurologist, ENT; etc); but everything came back negative, I see a neuro-ophthalmologist next week, so we shall see. The dizziness is driving me crazy. Thanks again,

[socrates_8 in reply to Bears23]

Hey again Bears...

Actually, no!

When I had my first TIA, as it turned out, I was yet to be diagnosed, and like you immediately went to be tested and everything showed up as Negative for a stroke event. Apparently, this is not so uncommon w/ TIAs, and that is one of the reasons why it is known as a 'Transient' Ischemic Attack (TIA), as it dissipates so rapidly.

Like Maz suggested above, I also went and had my eyes tested and I asked my ophthalmologist about the strange white lights that I was seeing in my peripheral vision, and he said: "That sounds like something more serious than a simple vision problem..."

And as it eventually turned out, he was correct. My first TIA was August 19, 2015, and I was yet to be diagnosed, and not even taking aspirin...

In my view, definitely worth you following up with your doctors, just to be safe etc.

Best wishes

Steven

[Bears23 in reply to socrates_8]

Thanks again, hate to bother you but,...how did you confirm it was a TIA? Or did they just assume it was a TIA? And what did you do for your eyes? are you on meds for ET, now since you had the TIA? Just trying to gather as much knowledge prior to my next appt, and appreciate your input since you had similar episode.

[socrates_8 in reply to Bears23]

No bother at all Bears...

That's precisely what this site is here for; for all of us MPNers being enabled to ask, and answer many of our own questions...

After my first TIA in August 2015, I was eventually diagnosed in shortly thereafter in May 2016. However, there were a host of speculations by a host of doctors, who presented with creative diagnosis from a pinched nerve in my shoulder to too much coffee...

After being diagnosed, I discussed the event with my specialist, who had little hesitation in placing me as a 'High Risk' patient initially with platelets over the 1.7Million mark. Hence, it was believed to have been related to my ET, and then after my first BMB I was reclassified as MF with a Grade2 level of bone marrow scarring.

How was your BMB? Have you had one as yet? Or is it not currently required by your medical team?

I have been on HU, Interferon Alpha, and now Ruxolitinib (Jakafi), and low dose aspirin.

Personally, I could not tolerate HU at all, and also struggled w/ Interferon Alpha too... But we are all different. Maz, for example, I believe might tell you that HU works just fine in her case...

The good news is that my eyes are just fine apparently...

Best

Steven

[Bears23 in reply to socrates_8]

I had a bone marrow biopsy, tested positive for jak 2, no scarring at that time. How did the doctors confirm it was TIA? Did they run a special test, or just based on symptoms? How did your eyesight improve? On its own, or with meds, or treatment? What makes it frustrating is some doctors ( not my hematologist) will downplay the TIA, not understanding how it connects with ET.

[socrates_8 in reply to Bears23]

TIA was assumed by my specialist based upon my descriptions of the event. I have very poor veins, and pathology were unable to extract any bloods immediately after the event. Apparently, a spike is often recorded in one's bloods immediately after a TIA, so I was informed...

Eyesight was fine, and simply returned to 20/20

In my experience, I have become a tad forgiving towards the medical fraternity knowing that it was only 1.5 decades earlier when the first 'Driver Mutations' were first uncovered. That being the JAK2 mutation, since then both MPL and CALR, (c. 2006 & 2013), have also now become known mutations.

I fear that there is still much to learn, and we are really only at the tip of the proverbial iceberg. That said, we also have good cause to be more optimistic too, in my view... Genetics might well hold the key to stomping out these types of mutations altogether in due course...

I am uncertain as to how things are in general consultation with GPs in the UK, however, here the culture might better be described as 'Rut-like'. People are simply shunted like sheep through GP's rooms and issued w/ prescriptions while GPs are often barely reviewing the actual blood tests results etc... However, that is a personal view, and one that I am hoping to be lobbying against down here in due course...

In Oz, we did not have our own FORUM website until very recently, when Maz and MPN Voice were instrumental in helping me create an Australian MPN Forum for Aussie patients ...

MPN-MATE.COM

Please feel free to drop in with a post anytime Bears, naturally you are most welcome of course...

Best

Steven

[Johnsb]

Have you gone to a behaviorial optometrist, they can check how well your eyes track and there are simple exercises you can do to get them to work together. We had to do that for our son. I have PV and am JAK2+ so my symptoms may not be the same, I get dizzy, more light headed due to my low iron level and being anemic as a result of treatment.

[Bears23 in reply to Johnsb]

Thanks, I have an appt. next week where they will do an extensive eye test.

[hunter5582]

Depending on your age and other medical conditions, you may be monitor only or aspirin only with platelets only in the 600Ks. The newer research/thinking indicates that there is no straight-line statistical correlation for risk of thrombosis whether your platelets are in the 500Ks - 800Ks. Determination of thrombosis risk is more complex than just looking at numbers on a CBC. For some of us, it is actually our risk for hemorrhage that goes up as platelet levels get higher. There is some recent research indicating that far more people with ET/PV than were previously realized show signs of Acquired von Willebrand Disease with platelet levels in the 800Ks. Used to be thought that this only happened when platelet levels were well into the 1 Millions. Be sure to educate yourself about ET/MPNs so you can ask to docs the right questions and understand what they are telling you. Also be sure to ask your doc - 1. How many MPN cases have you treated? 2. What recent MPN-specific training have you had? Lots of docs, even hematologists, do not have the KSAs re. MPNs since they are so rare. Some just rely of their original training, which may be decades out of date. I am really blessed to have an on-going doc who does not have a lot of experience with MPNs, but is willing to learn and actually talk to me - and a consulting MOPN-expert doc who informs us both. I found the MON expert doc on this list of patient recommended docs mpnforum.com/list-hem/ .

There is lots to learn as you enter this journey. The good news is that there is lots of promising research emerging and most of us with MPNs lead long lives, even if challenged by symptoms at times. The best thing you can possibly do for yourself is to find docs with the expertise you need and not just settle for whomever happens to get assigned to your case wherever you happen to be. You have the right to determine who your provider(s) will be. The docs work for you, not the other way around. The good news is that there really are some great - knowledgeable docs out there - you just have to find them.

[Bears23]

Thanks for taking the time and providing this info. I see two doctors and both are on the list you provided, which I was happy to see. Been getting dizzy spells and nausea and doctors are considering starting the treatment (meds). Just trying to learn as much as possible,and appreciate everyone’s help.

[MaggieSylvie]

I get that but I don't know what causes it. I've recently had my eyes tested, and apart from cataracts, that haven't changed much since last year, there's no answer. It could be caused by the myelodisplastic syndrome (anaemia) or the slightly high platelets (I don't have ET; I have thrombocytosis - no "essential"), old age or low blood pressure. That's in my case. I take daily aspirin, pregabalin for a host of things and erythropoietin injections for the haemaglobin. I rattle with supplements. So it could also be pregabalin induced but I've had it prior to taking that. It's a mystery.