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    • #15938
      Jean Mellano
      Keymaster

      It seems like every time I turn around, I have some weird thing going on with my body. Is it PD, age?  Once or twice a day, I get numbness and pins and needles (also called Paresthesia) in my left fingers (left side is my PD most affected side).

       

      Have you experienced this symptom?  What did you do about it? How often does it happen to you?

    • #16117
      Betty D
      Participant

      I had DBS a year ago and, since them, have experienced several “weird“ symptoms. I do have pins and needles in my fingers . This started soon after the DBS surgery, and it has progressed to the point that my hands look like the hands of someone with Raynaud’s syndrome . But blood tests don’t bear that out.

      • #16198
        Karla Burkhart
        Participant

        I have more trouble with my toes than with my fingers. I have not DBS. There are so many strange symptoms with PD that made it hard to diagnose. The tingling, numbness, and pain are hard to live with.

        • #16213
          Jean Mellano
          Keymaster

          Hi Karla.  I agree, there are way too many symptoms with this disease!   I think my balance on left leg is getting worse due to the numbness at the outskirts of the sole of my left foot

        • #16214
          Jean Mellano
          Keymaster

          Hi Karla.  I agree, there are way too many symptoms with this disease!   I think my balance on left leg is getting worse due to the numbness at the outskirts of the sole of my left foot

    • #16131
      Jean Mellano
      Keymaster

      Betty

      I have not had DBS, so i cannot attribute my pins and needles to that.  Overall, are you happy with your DBS results?

    • #16133
      Betty D
      Participant

      Hi Jean,

      I don’t think my DBS has had a fair chance.  In the one year since having the surgery, I’ve had other ailments that have kept me feeling pretty poorly. And I’m having difficulty knowing what is not or might be a side effect of the DBS.  I am particularly curious about nerve pains like pins and needles.

    • #16142
      Jean Mellano
      Keymaster

      betty, i am sorry for your struggles. have you heard of peripheral neuropathy?  (https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061)

      my p/t mentioned it since i told her my balance is worsening on my left side.  sometimes the outer edges of my left foot cannot feel the floor.

    • #16187
      Chris
      Participant

      Pins and needles in my fingers as well as a lot of pain in my elbow and forearm had me going to an upper extremity doctor.  I thought I had hyperextended my elbow while getting into bed but no amount of p/t had helped to alleviate the pain.  So the doctor sent me to the neurologist to get an EMG thinking it might be a pinched nerve.  Everything was fine but the neurologist noticed my hand tremor an eventually diagnosed me with PD at age 42.  I had 4 hip surgeries on my right side before age 40 ending with a THR.  I thought my hand tremor was how my body responded to pain, boy was I mistaken.  Anyways, I’m thankful for the neurologist spotting my tremor.  The doctor did eventually give me a steroid injection in my elbow but it only gave me relieve for about a month and came to conclude it was PD, so just dealing with the pain.

      • #16192
        Jean Mellano
        Keymaster

        Chris. U sound like u have been through the wringer.  Although being told u have pd is not such a great thing, however I am glad u found a neuro who figured out what the root problem was

    • #16193
      Chris
      Participant

      Hi Jean.  You are right, PD isn’t what you want to hear at all.   These last 7 months or so have been difficult to wrap my mind around the diagnosis.  However, after going through the symptoms and researching PD it does at least give me an answer.  It’s not just in my head anymore.  Thank you for the words of support.

      • #16195
        Jean Mellano
        Keymaster

        After I was first diagnosed, I went for 7 ‘second opinions’ as I could not believe I had this disease.  When I got my datscan, it finally convinced me when I saw how ‘unlit’ my brain was compared to a normal scan.

        Hang in there chris, u r not alone…..

         

         

    • #16197
      Michael R. Scott
      Participant

      Good Morning Jean,

      I get mine in my left hand and wrist about 30 minutes before my next scheduled dose of Sinemet ER (50/200) and it goes away roughly 30 minutes after. If I take two 25/100’s, it goes away faster. If I forget and go over, that same numbness begins to show up in my left foot and ankle as well…. I’ve come to call it “My little reminder”…..

      Mike

      • #16210
        Jean Mellano
        Keymaster

        Hi mike

        thanks for sharing.   What a great way to be reminded your next dose is due !  Lol. Unfortunately there is no rhyme or reason to when I get pins and needles 🙁

    • #16203
      Melba W. Benson
      Participant

      Jean, my neurologist prescribed over the counter Lidocaine 4% for my paresthesia symptoms as you described, and it works great.

      • #16212
        Jean Mellano
        Keymaster

        Hi Melba.  Have you always had the pins and needles ? Any side effects?

    • #16207
      Michael R. Scott
      Participant

      Chris,
      Your experience is similar to mine. Two hip surgeries on my right and finally one on my left. But, get this, in recovery for my left, the nurse handed me some ice water and I took it with my left hand which immediately began shaking scattering ice water all over the place. The recovery nurse asked me “Hoe long have you had that “? My answer “About 10 Seconds ago”! Needless to say, it got very quiet in recovery. My PD diagnosis was several months later….
      Mike

      • #16221
        Chris
        Participant

        Mike,

        The shaking in my right hand began after one of my hip surgeries, I can’t remember which.  It started mild and only when I was in a lot of pain or when my anxiety was high but steadily became more often.  I recently read about a case where a person came out of surgery but couldn’t move.  It took a while but he slowly began moving again and was eventually diagnosed with PD.  They were looking at whether the anesthesia triggered his PD.  Something to keep an eye on.  Thank you for sharing your story with me.

        Chris

    • #16222
      Chris
      Participant

      Does anyone lose feeling in their toes?  Oftentimes one or two of my middle toes will be numb, like they are asleep and I can’t feel them or move them.  If I sit in a hard or rigid chair my toes usually go numb.  Just curious if anyone deals with this as well.  Thanks

      • #16223
        Jean Mellano
        Keymaster

        Chris, I think my balance on left side is affected by numbness on outer parts of the sole on the left foot.

      • #16225
        Jean Mellano
        Keymaster

        Chris, I think my balance on left side is affected by numbness on outer parts of the sole on the left foot.

    • #16227
      Betty D
      Participant

      Hi Jean, I have indeed heard of peripheral neuropathy. I’ve been diagnosed as having it, though the diagnosis is far from clear.  Nerve pain in the extremities can be caused by many things, including spine problems.  I am trying to eliminate some of those  before accepting the pn diagnosis, which can be pretty awful.

      • #16229
        Jean Mellano
        Keymaster

        Hi Betty. Even though I have multiple second opinions that all indicated pd, I am still trying to rule out sleep apnea and thyroid issues that could be causing my horrible fatigue.   Something tells me my fatigue is related to pd.  🙁

         

        you r wise to rule out other issues ,  I wish u luck.

         

    • #16245
      Melba W. Benson
      Participant

      Jean, I had the pins and needles sensation for 2 years before being diagnosed properly by the 4th neurologist I went to.  Thankfully the 4th neurologist prescribed the over the counter Lidocaine 4%.  So far it has worked perfectly.  Where I have the sensations are on my forearms and on the calves of my legs.

      • #16253
        Jean Mellano
        Keymaster

        Melba. I am always amazed to see how all of our pd journeys are so different. Sounds like u have an attentive neurologists

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