Another symptom I think I am experiencing is tingling or pin/needles in my finger ends but mainly in the morning. Is this a proper thing only you start getting a bit paranoid with all this?
I went to see Heam doc last week and felt the appointment was very rushed, I found him hard to understand and he spoke quickly…He spoke, I didn’t and didn’t get to ask any questions on this appointment.
I came away feeling a little let down after joining this forum with all the info on here
I have major itching which I have been told by him to try fexofenadine to see if helps and he mentioned interferon if things don’t settle but wants to hold off as it is a long term treatment, end of! have my next appointment on the 25th…🤷♀️☹️
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Grendall
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hello Grendall, so sorry to hear that you had such an experience at your appointment. It might help to contact your haematology nurse specialist and speak to her/him about your symptoms and how you felt that the appointment was very rushed and that you didn't have the opportunity to ask any questions. Best wishes, Maz
Vitamin B-12 deficiency may cause “pins and needles” in the hands or feet. This symptom occurs because the vitamin plays a crucial role in the nervous system, and its absence can cause people to develop nerve conduction problems or nerve damage.Hope you find out what's causing it
When I saw someone who didn't listen to Me I asked the heamo nurse to put in my notes I didn't want to see him again.
Really you asked not to see them again?Thank you so much for that info. I was hoping to see the nurses on the last appointment but saw the Doc. I don’t know until I get 5here that’s the problem
Sorry to hear about the rushed appointment. That is never a good experience. I always go with a written list of questions/issue that I hand a copy of to the doc. This helps to structure the appointments and get questions answered. Mazcd has good advice in calling to consult with the Nurse Specialist. Hopefully you are already being seen at a MPN Center rather than a regular hematology practice. If not, be sure to consult with a MPN Specialist for the best care.
Regarding the pruritis, some do find relief from an antihistamine like fexofenadine. However, Ruxolitinib (Jakavi) is known to be the most effective of the MPN treatment options for this symptom. Not sure why the doc would be holding off on the IFN if that is your preference. ET is a long-term disease as is its treatment. Pegasys is recognized as one of the two first-line treatment options for ET. It may well help with the ET symptoms you are having (pins-and-needles, itching).
FYI - the pins-and-needles can have different causes. Can be a paresthesia (neurological) or erythromelalgia-like (microvascular). If it is microvascular, some find a twice daily dose of aspirin resolves the issue. This is an issue to review with your MPN care team to assess and treat properly.
Thanks Hunter as always.I am in Leeds and some ppl on here have mentioned a different Doc to who I am seeing, I do believe he is just a Heam doc, I will try and get to speak to the nurses and see if I can get to see this other consultant
Generally you'll feel a lot more warmth and compassion from members here than from your Dr. Dr doesn't (usually) have bone cancer so it's just a mechanical problem to most of them.
That tingling etc is classic MPN type of issue, I had it. I see your post on fatigue, ditto on that. So a good starting place is to check your blood counts and be sure they are properly controlled. With ET your platelets are likely to be high, but others can be out of place too such as red and white blood cells. These are always tracked carefully with MPN conditions. If your Dr is not checking, or sharing this basic info with you, you need another Dr. There is a short list of meds that address these MPN conditions.
As Mostew says, other blood results can make a difference too and looking for these others out of range is important. Checking, and fixing the cause of when possible, blood counts is always a good start.
My tingling improved most once I started interferon therapy, but at least your Dr should be discussing the basics now.
I also get a tingling in the tips of my fingers and sometimes a hot, burning sensation too. This is what prompted me to see my gp in the first place, and after blood tests it was discovered that I had ET. I sometimes get a shooting pain in my toes as well especially my big toe. I don’t worry about it but just see it as part of having ET.
Hi GrendallI had similar problems to you, major itching, and minor, but to me, worrying side effects from hydrea and like you I never knew who I was going to see, and very often I had a telephone call several days before my due appointment and so was caught on the back foot with my questions. I felt as if nobody cared what was happening to me.
This was resolved by getting a referral to an MPN specialist for just a one off consultation.
I was rediagnosed with PV and am now taking Rux as part of the Mithridate trial, my participation in this will be for 3 years and I don't what the future holds for me. But I know I'd rather the fatigue and the weight gain to going back to the awful itching.
I was wondering whether to try and get a one off consult with an MPN specialist but not sure if I have to have a referral from my hospital Heam doc or if I can just try to locate someone…
OK, so I started by emailing a request for an appointment to two specialists (all info found on internet) addressed to their secretaries and had positive responses from both. Due to the pandemic I chose the nearest and I spoke with him on the phone about my symptoms. He said he was happy to see me but to get a referral from my haematologist. I rang the haematologist's secretary with this request and the haemo called me back and by starting the conversation with " Dr so and so has agreed to see me so would you please do a referral because I want a second opinion".Got there in the end although I found it stressful but it was the best thing I ever did.
I really feel for you, the itch is horrible and governed how I led my life for years, so I hope you can get some help.
Sorry to hear you had such a bad experience. The advice to have your questions written down is the way to go. I have much more satisfactory appointments since I do this, as I would forget to ask something. It’s an excellent idea to give a copy to the Dr. I would also ask Dr to repeat when they speak too fast, after all it is your appointment. Hope it gets better for you.
So sorry you felt like thatMaz has given you good advise but rest assured if he’s offered you interferon he was listening. Out of desperation I asked about it and now no going back. I didn’t have tingling only chronic fatigue.By the way could it be your platelets are too high for you. I used to feel drained if mine went over 450.
I do hope you get answers and start to feel better.
Sorry to hear of your difficulties with the Heamatology dept. I don't get much in the way of pins and needles but I do occasionally get sudden sharp pains in my toes, which someone else has described. The itching for me was terrible and when I scratched my skin came up in terrible stinging welts. Its was that prompted me to the doctors in the first place before being diagnosed with PV. The hydroxy, unfortunately, doesn't cure the itching but I was prescribed anti-histimine and I have taken them every day since. I find one a day pretty much stops the itching but if i forget to take one, I certainly know about it within a couple of hours!
Hi lovely am also new on this site and also experience buzzin like pins and needles I also feel like I have growing pains in my legs all the time that’s the only way I can describe it , this site has been a little gift send x hope you are ok xxx
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ET symptoms/leg cramps night
Feeling sad, upset, angry and let down after my BMB in NZ
Is ET the same as PV?
