Had ophthalmology appointment today as I'm getting flashing vision and migraines. Found out I've got the start of cataracts in my right eye. I'm only 48 yrs young 😉
So guess migraine visual disturbance all due to ET.
P.s still got ringing in ears
Best wishes lainy 🤗
Hi Lainy, sorry to hear you are bothered with flashing lights and migraines. I have PV and get them occasionally. They are scary for a start but I don't think it's quite as bad (although the headaches aren't nice) once you know what it is.
Hope you don't get them too often. Kind regards Aime xx😺😺
Morning Lainy , im not sure whether ET is the cause i have glaucomma and had flashing lights started 7 year ago , then aftera while developed cataracts . i had these done over 2 year ago , still get odd few when its dark , the only thing i have now and again are opitcal migrains ,last around 15 mins , im permantly on eye drops anyway for glaucomma
my Et / jak 2 pos was diagnosed 3 year ago and started HU last september , i suppose when getting older we will get other health issues ,not always related to mpn ? also i have had tinitus fir over 10 years so i know this is not related in my case all the best Holly
Hi holly, thanks for reply.
I find now I'm blaming g everything on ET and not the age process 😉
Wish there was a tablet I could take to switch of the faulty gene that is permanently on in my bone marrow.
Agreeing with all said ! Me too cataracts,told that it will take 10 yrs before needing treatment......probably be long shrugged mortal coil by then.....tinnitus too and headaches....tho they were much worse before Hydrea,got a whacking one this morning,can't think why,part and parcel of our maladie .Best to all of you ,Sally.
Hi Sally, hope your headache goes away soon.
Best wishes lainy 🤗
Hi Iainy,I had to give in and go back to bed....just awake now feeling much better,had so much I wanted to do today.......this is our story I'm afraid.!!! Thanks for your mail,much appreciated...Best to you too ,don't worry ,we are survivors we M P N ers.! Sally
Hello Sally, i had headache this morning , i think its because i did not drink my quoter of water yesterday! i did have a small beer too .. I find it hard to plan much in advance , because we never know how we will feel , last weekend ,sat eve i invited friends over for wine and bytes after church sunday but luckily i was feeling great monday not so good !! glad your headache eased . best wishes Holly x
Thanks Lainy and Holly,Iam up now ,had small dinner,will go back to bed for early night!
They are a sod these headaches,the cotton wool feeling as well,my H C T is a prob just now,maybe that is the cause.Thanks both,helps to have friends on site who understand.Cheers both Sally xx
Hi guys... 
Lainy, I agree with most of what all of you have been discussing. However, I am not taking HU these days but rather Ruxolitinib.
I can also recall, that prior to my first ever TIA (August 2015), I was suffering from those 'flashing traces of light' in my periphery, and I do also occasionally have a return of some tinitus.
During that TIA, the tinitus rose into a painful crescendo before I lost the power of my speech, and gained a paralysis in my right arm. I do not wish to unnecessarily alarm anyone. However, I was a tad apprehensive by the fascination of the sense of being locked in a body that could no longer obey my prompts...
Perhaps, I too should be checking for glaucoma...? I will as a precaution attend to it shortly.
On the other front, perhaps you should alert your doctors as to these symptoms, just to be on the safer side of that possibility...
Best wishes
Steve
(Sydney)
Hi steve, hope you're well.
Doctor thinks my tinnitus is due to asprin so she has taken me off of it the now but only for one week to see if it goes away.
Nope no such luck still there and loud as ever. I've now got a whooshing noise in other ear, it actually whooshes in time to my pulse. If I run upstairs it gets faster then calms down. Very strange. Had a migraine frome hell from last night. It's better now tho 😀
Best wishes lainy (uk)
Morning Lainy...
Hmmm... Your doctor might be correct? I am no doctor of course.
And I certainly do not want to alarm you... however...
Today, after having experienced that TIA (minor brain stroke in late August 2015), I try to be much more aware of what's happening with my Platelets (BPts), and if they are getting to high again (and I was experiencing some other symptoms like a facial tic, tinitus, and problems with my vision), I believe that I would have just-cause to being concerned.
Whooshing sounds, do sound rather interesting!
I find when I have been doing my exercises that sometimes my pulse does become louder, and I hear it between my breathing cycle. Of course, it is a tad more expected at that juncture because I am working out etc.
I'm struggling these last few days, as Sydney is growing colder by the moment. And the cold and I do not mutually enjoy each other's company very much at all...
Last few days, I have been getting a serious cramp like pain in the middle of my lower back, and it is making sleep nigh impossible. I am also already having shortness of breath again because my exercise regime has been non-existent these last few very cold days... May have to join a gym, but sharing that space concerns me too...
My last lot of bloods were trending downwards but my Haemoglobin (Hb) had dropped rather significantly from mid 130s to 117, and my Haematocrit (Hct) was down to 0.33. I have also grown a tad anemic which also bothers me because for a while I was suffering from bleeding gums, and I am due for my next dental assessment very soon.
How are your bloods Lainy?
If they are getting too high perhaps you could ask Maz to ask Dr Harrison about your symptoms etc...?
I do wish that I had someone like Dr Harrison in Australia, if someone like that does exist, they must be hiding extremely well, because I have not uncovered them as yet...
Have an awesome day Lainy.
Steve
Hi steve,
Will take on board advice you have given me.
My bloods: platelets high, HB borderline to monitor, red cell normal white cell only at 9, haematocrit slightly raised. Don't know w act numbers just what my haematologist said.
Don't worry, if I have any symptoms of a TIA or stroke I will be right over to the hospital toot sweet 😲
Stay warm and best wishes lainy 🤗
Morning Lainy...
Good, its not worth the risk, having a TIA I mean...
I have been monitoring my full blood counts (FBCs) ever since this journey started. I have also learned what these changes might indicate. However, it is not about individual 'one-off' abnormalities that matter, generally. Rather it is about seeing the consistent trends, which then aids in my understanding of what might be happening via those FBCs etc...
My next FBC is tomorrow, and it will be interesting to see what has been transpiring...
Best wishes stay happy & well...
Steve
JAK2 (V617F) allele burden Update
Husband in hospital update. 
Updated Numbers Based on Recent Appointment
Bomedemstat Trial Update
