Tingling

Posted , 9 users are following.

I somehow ended up about two months late for my draining. After about a month overdue I started getting pins and needles, tingling in my fingers, hands, aims, feet, legs.

I figured it was cause I was late and it would stop.

I got drained and it hasn't stopped, I've now read it's a symptom. Does that mean once it's started it is there forever?

Now it's in my mouth, throat, lipssad

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  • Posted

    It's important not to miss draining appointments.  Do you know what your current blood levels are? Tingling is a symptom, but went away in my case once I began to near my normal levels. I still have dizziness and unclear thinking, but that may be a result of a secondary condition.

  • Posted

    Pins and needles (paraesthesia) is a pricking, burning, tingling or numbing sensation that's usually felt in the arms, legs, hands or feet. It doesn't usually cause any pain, but it can cause numbness or itching. Pins and needlesis usually temporary, but can sometimes be long-lasting (chronic). Temporary pins and needles Most people have temporary pins and needles from time to time. It happens when pressure is applied to a part of the body, which cuts off the blood supply to the nerves in that area. This prevents the nerves from sending important signals to the brain. Putting weight on a body part (for example, by kneeling) or wearing tight shoes or socks can potentially cause pins and needles. Temporary pins and needles can be eased by simply taking the pressure off the affected area. This allows your blood supply to return, relieving the numbness or tingling sensation. Other common reasons for temporary pins and needles include: a condition known as Raynaud's disease – which affects the blood supply to certain areas of the body, such as the fingers and toes, and is usually triggered by cold temperatures or sometimes anxiety or stress hyperventilating (breathing too quickly) Long-lasting pins and needles Sometimes, pins and needles can occur over a long period of time. It can be a sign of a wide range of health conditions, including: diabetes – a condition in which there is too much glucose in the blood. a compressed ulnar nerve – the ulnar nerve starts in your neck and runs down the inside of your upper arm to your elbow, then down to the little finger side of your hand; it can be compressed at any point, but the elbow is most commonly affected carpal tunnel syndrome – pain, numbness and a burning or tingling sensation in the hand caused by a build-up of pressure in the small tunnel that runs from the wrist to the lower palm (the carpal tunnel) sciatica – pain caused by irritation or compression of the sciatic nerve, which runs from the back of your pelvis, through your buttocks and down both legs to your feet Persistent pins and needles can also occur after an injury, or be caused by certain treatments, such as chemotherapy. When to see your GP Most cases of pins and needles are temporary and the sensation disappears after the pressure is taken off the affected area. See your GP if you constantly have pins and needles or if it keeps coming back. It may be a sign of a more serious underlying health condition. Treatment for chronic pins and needles depends on the cause. For example, if it's caused by diabetes, treatment will focus on controlling your blood glucose levels. Other causes Long-lasting pins and needles may also be caused by: a condition that damages the nervous system – such as a stroke, multiple sclerosis or in extremely rare cases, a brain tumour exposure to toxic substances – such as lead or radiation certain types of medication – such as HIV medication, medication to prevent seizures (anticonvulsants), or some antibiotics malnutrition – where the body lacks important nutrients because of a poor diet a vitamin B12 deficiency nerve damage caused by infection, injury or overuse – for example, a condition known as hand-arm vibration syndrome may be the result of regularly using vibrating tools alcohol misuse cervical spondylosis – the bones and tissues of the spine can wear down over time, leading to trapped nerves and occasionally pins and needles Page last reviewed: 01/04/2016 Next review due: 01/04/2018 Show other content ? Share:??Back to top.

    Hope this helps to find an answer

  • Posted

    Don't worry Natalie, it's not there for ever but mine tends to come and go and there is never a clear reason for it - just part of the condition I'm afraid

     

  • Posted

    Hi, I'm only into my 4th month with PV. I have some symptoms which never have gone away and others that recently have returned despite my levels being near normal. I dont get pins n needles like you just burning feet and body and also very itchy legs after a shower. The returned headaches are bad at the mo along with the fatigue. So far I think this condition is a plague, symptoms judt never completelyals :-(

  • Posted

    Hi Natalie  yes tingling or pins & needles are definite symptoms of Pv.  I've had it.  No it's not forever.  I was told this disease the symptoms wax & wane.  It can drive you crazy.  It's a complicated disease.  Linda

    • Posted

      Hi joy I've been dx for 4 yrs now.  I have had burning of a foot out of nowhere. It doesn't last long.  As for the itching after a shower it didn't happen all summer cause I layer out in the sun.  Ultra violet light stops the itching.  I'm getting it again and apply benedryl cream to the itchy ares.  I also read that Zyrtec & Zantac taken together stop the itch.  I haven't tried it yet.  I do take Benadryl pill if it gets to be too much but then it drys out your mouth.  Good luck. Linda

  • Posted

    Hi Natalie I am experiencing tingling in my left leg & foot after I take Jakafi.i just read it could be nerve damage. I'm thinking we might have to see a neurologist.  Please keep me posted if you find any answers and I will do the same. Thanks Linda

    • Posted

      Hi Linda

      I have been following your posts with interest. I haven’t responded until now as Peter has answered your questions most eloquently.  I don’t know what the possible side effects of Jakafi are but I do know that Hydroxyurea can have an effect on the nervous system. I believe the medical term is called Peripheral Neuropathy. (I know from reading your posts that you were initially started on Hydroxyurea but couldn’t tolerate it) Jakafi may not have this side effect but perhaps it’s worth having a chat with your Haematologist/MPN Specialist? Just a thought.

      Kind regards

      Keith  

    • Posted

      Hi Keith thanks for your response.  Peter has been very helpful and kind.  I couldn't tolerate HU at all.  3 days in my whole body ached which is really no quality of life.  So I was prescribed Jakafi 1 10 mg tablet twice a day.  I was on that dose again for 3 days and the same thing happened again. My whole body ached.  My plates dropped from 1 mil to 795 on that dose.  My dr told me to try 1 a day and my plates went back to a million.  So he's gonna put me on steroids to help with the aching for 2 weeks.  The goal is 2 10 mg Jakafi a day.  If that can't be achieved I'm out of options. Thanks for your concern.  I'm in the US. Linda

  • Posted

    Hello Natalie.. . . . I was diagnosed 10yrs ago with PV and I've had the numbness and tingling in my fingers and hands since the beginning. It comes an go's but I've gotten used to it. Sometimes I wake up at night with it I usually grip my hands or shake them to get the tingling out and go back to sleep. . . . . Hope things get better for you.

    • Posted

      Hi Randal I just read your response to Natalie.  Just wondering if you're on any meds?  HU or Jakafi or do you get phlebotomies?  I'm in the US if you're in the UK I think you call them venesections. Linda

    • Posted

      Hello. I only have Phlebotomys every 6 to 8 weeks and take a daily asprin and with other meds for high blood pressure . I too am in the US.
    • Posted

      Thanks Randal  I've been dx for 4 yrs now.  My platelets hit a million last month so now I'm on Jakafi. I only had 1 phlebotomy I think cause my hematocrit were never high. I'm still learning. I felt better before th Jakafi.  I do have tingling sometimes even my tongue.  Good luck with your journey.  I think men handle it better than women. I also have high blood pressure that I'm convinced is from the Pv cause they both happened together. Linda

    • Posted

      Linda. . . . Im happy to answer any questions you ever have, as are alot of the other members of this forum. I'm fairly new to it. As I said I was diagnosed in 2006 with PV. I was checked for the JAK2 mutation around that time but I can't remember if it came back positive or negative and I asked my Doctor a while back to look in my records for it and he can't seem to find it now. So I'm going to have it done again. As far as my symptoms I'm tired all the time, have night sweats from time to time, have the numbness and tingling in my fingers and hands from time to time, small headaches when it's getting close to my time for blood to be pulled, I am always nauseated. I'm 52 and work full time. They pull blood off me anytime my Hematocrit is over 45. The highest it's ever been has been 49 and the highest my Hemoglobin has been is 17.4. . . . My phones about to go dead so I'm gonna stop here. . . . . .hope this helps

    • Posted

      Hi Randal I don't feel tired much have had night sweats from time to time as you.  I am jak2 mutation positive.  Thanks for responding.  Everyone is so helpful here I'm so happy to have stumbled upon it.  No one I know gets it.  It's so frustrating to try & explain that I give up.  It's so rare I guess that's why. So to find you guys just like me is a blessing.  I live in New Jersey.  Mostly everyone is from the UK.  Linda

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