Fingers blue/numb but only lntermittently

[IrishHiker]

First time for me! Middle finger middle joint turned blue and top joint blanched, became numb and tingling. It lasted less than an hour then went away. It happened several times though for the past three days. On day 2, my little finger (on same hand) also started doing same thing. They become almost painful due to numbness. I have ET. Wondering if it is caused by mini clots??

[rebeccalub]

Yes, it can be or it could be Raynaud's syndrome if the onset is caused by colder weather.

[IrishHiker in reply to rebeccalub]

It is odd because it has never happened to me and I am aware of Raynaud’s since my partner has it. I was not really outside in cooler weather when it happened but driving in a warming car or inside my home.

Thank you for your input😊

[rebeccalub in reply to IrishHiker]

I would definitely consider microvascular clotting then.....make sure you keep track of it and share with your hematologist.

[quonut]

Good Morning

Yes it is possible, speak to your haematologist with these symptoms, i have mentioned this before on this forum before, just before i was diagnosed with PV i was having numbness/tingling on several fingers, at first it was intermittent but grew to be a weekly then daily event. After starting my treatment on Interferon alpha injections i was told this was a TIA event, blood to thick/clot. I dont mean to alarm you because we are all different but this was my experience. i have not had any issues since i started treatment. Seek advice and good luck.

[IrishHiker in reply to quonut]

Thank you am awaiting to be scheduled to consult with a new doc. Hard to be a patient patient!

[Tico in reply to IrishHiker]

Hi IrishHiker. I posted around 2yrs ago with the very same thing and also included a picture. I've spoken to 2 haematologists about this and both suggested raynauds. When nothing conclusive came up on further blood tests it was never mentioned again. I've had to learn to live with it and had it since just being diagnosed with Etjak2 getting on for 13yrs now. The truth is if its not in the consultants text book they are flummaxed by it. A lot of the symptoms people with one of the mpn's frequently get are often dismissed by consultants. At the moment i'm sufferering with extreme fatigue and some weakness,I know its because my Hb is hovering around 11 but more importantly my Hct is rather low at 31 but as usual the consultant is as always fixated just on my platelets as they have been bouncing about again recently. I do suggest you talk to your haemo about it though because if you look at the post I mentioned we're not the only ones suffering with this. Please keep me updated. Take care. Tina.🤗

[IrishHiker in reply to Tico]

Thank you for your input TIco. It actually is listed on the Mayo Clinic's website as one of the symptoms of ET. I have just been having a lot of different symptoms since April. What with COVID pandemic I am finding it difficult to get things looked at and I am in the process of trying to get an "in person" visit with a new hematologist here in Ireland. I too have severe exhaustion and shortness of breath with minimal exertion. I am grateful for the health I do have but this is getting worrisome :/

[Tico in reply to IrishHiker]

I would therefore insist on a face to face with your consultant and tell them how worried you are. I've read a lot about the Mayo in the USA and know they are a lot more up to date than our UK counterparts when it comes to mpn's. When is your next appointment with your haemo and is it a telephone call or virtual one? Tina.🤗

[IrishHiker in reply to Tico]

I am in the process of arranging an appointment. I left a voicemail at the clinic. My GP already sent the referral last Wed. I have not yet heard back from the Hematologist's office

[Tico in reply to IrishHiker]

How long have you had Et and do you have any of the mutations, ie, jak2 or calr? Tina🤗

[IrishHiker in reply to Tico]

20 years now and I was never told that I had any of them, no. But not certain if they even were checking on them back when I had my Bone marrow Bx. and labs done.

[hunter5582]

At the risk of sounding like a broken record, I will still suggest to be sure to see a MPN Specialist. Many hematologists just do not have the KSAs to treat MPNs in an optimal fashion. I only see one doc listed in Ireland (Dublin) Dr. Evelyn Conneally. Surely there are more just not on this list mpnforum.com/list-hem./ .

Another approach is to find a good local hematologist who is willing to consult with a MPN Specialist. That is the approach I take. The MPN Specialist I see is two hours away, so a bit hard to use for routine care. I do periodically see the MPN Specialist, who consults on my care - which is provided but the local hematologist.

I do hope you get answers soon. All the best in the meantime.

[IrishHiker in reply to hunter5582]

The doc I am waiting to see is an appropriate choice for my ET. The original one I phone consulted with was not.

[hunter5582]

Outstanding! Good on you for sorting the wheat from the chaff. Do please let us know how it goes once you see the hemo doc.

[NewBloom]

I have this, consultant thinks it maybe be Hydroxyreau but has asked my GP to investigate to rule anything else.

[Planti]

Hi, I have yet to get the diagnosis of ET, platelets just over 720 and have first consult end of next month. I have the same thing though, end of a finger not really blue but very pale and numb, lasts for maybe an hour, different fingers and occasionally toe. Helps to put it in warm water. All my fingers are cold all the time though and feet too.

I am assuming that it is due to slow flow through the microvasculature in the extremities (poor circulation due to thickening of the blood) which is not a stretch when you have extra blood elements. Prior to elevated platelets I almost never felt cold unless it was really cold, now I put a hot pack in the bed even during the summer. I am not on anything prescribed as I don't have a diagnosis yet. I am pretty sure I have ET at least as my dad had it and his brother had PV.

Good luck with the new doctor.

[IrishHiker in reply to Planti]

Yes it is my guess as well that the incident was caused by micro clots.

I’m still waiting to have my appointment scheduled. It is a bit frustrating dealing with issues during COVID. I will phone the clinic again tomorrow.

Have you been told by anyone to take low dose (80mg/Baby) aspirin? If you are physically able it keeps blood thinner and prevents clots.

My platelets were almost 1000000 when I was first diagnosed. My GP at the time was clueless. It was a surgeon who referred me a the hematologist because my pre-op blood work was so off the charts. That was 20 years ago. I have since relocated from the US to Ireland and have been finding navigation of the healthcare system here interesting to say the least.

Best of luck and health to you.☘️

[Planti]

Hi, I started asa then wondered if I might be setting myself up for a bleed somewhere as suggested by others. So I am temporizing with upping vit E and adding garlic tabs, curcumin and fish oil washed down with a natural source of resveratrol (red wine). I don't have stomach problems with NSAIDs so am lucky and do have to take the occasional ibuprofen for arthritis in my neck and back (and and).

My platelets were just over 400,000 the upper limit of N in March of 2019 then 671,000 this June. I have online access to my lab results so phoned my family doctor and asked for the haematologist referral right away and she obliged (I am a little familiar with MPNs due to family history).

I am sure that you have gained a lot of knowledge over the years and this site is just great.

Hope that Ireland is as lovely as it sounds to me, despite the differences in medical systems.

[IrishHiker in reply to Planti]

Did you know that Vit. E, Garlic and FIsh Oil all have the side effect of "thinning the blood"? See this piece I found:

medicalnewstoday.com/articl...

Taking them all on top of ASA would really set you up for a bleed if you are not careful.

[IrishHiker in reply to Planti]

Forgot to add...Ireland is quite lovely and the people are friendly and helpful. I think that the COVID issue makes getting proper medical care challenging no matter where one lives.

[Planti]

Hi, yes so I started them after I stopped LD aspirin. They are much less efficient in their antiplatelet activity than aspirin, besides I can only bear to take a fish oil cap every so often as I don't care for the after effects. To bad that the better option, eating salmon more often, has a risk of exposing one to pollutants.

Glad to hear that Ireland is lovely and hope to get there one day. I had a holiday planned a few years ago but my dog had a stroke the week before. She lived another 6 years I am happy to say and made an almost complete recovery. Ireland is still on the list though.

I agree it is a very awkward time to have anything, including Covid 19.

[IrishHiker in reply to Planti]

This is true! Glad you found a good balance with your supplements that work. Happy to hear your dog recovered. Our Lab is getting up there in age and I am treasuring what time he has left. It is always hard to say goodbye to our “fur babies”. We are blessed to live here in Ireland.