Having been to my GP, A&E, back to GP (practice nurse) then feeling at a loss as to what to do next, as no one could give me an answer as to what had caused both my big toes to become engorged with blood, lifting the nail at the cuticle end, when I had done nothing to them, I finally self-referred to the local Podiatry Clinic. I explained my situation to the receptionist, who must have taken pity on me as she got me an appointment the same day (the waiting list was 10 weeks!!). The podiatry nurse told me she had seen this before, in walkers - I am not a walker - but it would appear I have developed a problem with a ligament on both toes which is pulling the toe in an upward position causing friction on the roof of the shoes I was wearing, very comfy, not new ones, I might add. I have to accept their opinion for the moment, but it all seems very odd to me how this has happened and that others on this forum have had a similar problem, so watch this space guys!!
Big Toe Trauma Update: Having been to my GP, A&E... - MPN Voice
Big Toe Trauma Update
Do you take Hydroxy?
Please, please SKSAR see haematologist immediately. Please Maz get Dr Claire Harrison to comment on this. I had exactly the same thing and it is not anything a podiatrist can fix. I was told it was due to my PV which was diagnosed at exactly the stage the haematologist learned about my toe problem. I think she called it something like erythromelalgia but that word is not maybe completely correct. This is a systemic problem and is a rare symptom of MPNs. The pain was atrocious even when so much as a sheet touched my toes. I was told it was the thick blood pooling in my toes and it was imitating gout. I was prescribed Hydroxycarbamide but also Allopurinol to clear my toes and the relief was almost instant. I don't have to even take the Allopurinol any more but just my Hydroxycarbamide. There was an article in MPD voice a couple of years ago written by a young man who had the same experience and it had got to quite a crucial stage before it was realised.
I have had Polycythaemia Vera since 2011 and the toe problem has not returned. I am positive you are suffering what I had.
Please let me know how you get on?!
Hi Crazy Daisy
Many thanks for your reply. Your experience does seem very similar to mine except I have had little or no pain with this, in fact as I write, things seem to be improving on both toes on a daily basis. I have looked up erythromelalgia on the nhs website and if this is what it is, then there seems to be a connection with our condition both ET and PV. As things stand for me at the moment I am due back at the podiatry clinic in a couple of weeks and at the Hospital for a check up a few weeks after that. I did have someone look at my toes a couple of weeks ago at the Haemo clinic but they just seemed to think it wasn`t gout and that was that. I am going to keep trying to get to the bottom of this, as with this rare condition of ours, there is a lot of learning to be had. Take care, Sksar
I was told I had erithromelalgia when in actual fact I had peripheral neuropathy as a side effect of massive amounts of a dire antibiotic called Nitrofurantoin!
Louise
x
Thanks for that Louise. I`m still keeping my options open on this one, but the toes appear to be coming along nicely except for the bruising on each nail. I`m hoping it will all grow out eventually. I can see next summer I will have to buy some nail polish to blend in with the colour!!
Little critters 😩
Update on BMB
Possibly not an ET symptom but thought I would ask :)
Hba1c up but good news otherwise 
