Discussions By Condition: I cannot get a diagnosis.

Severe upper arm pain followed by inability to move fingertip, thumb and wrist

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Heidilee
  • December 9, 2010
  • 02:12 AM

I hope someone can help me. I have been to four doctors (neurologist, 2 othopedic specialists and general physician) and they are all baffled. In April, I woke up with severe upper arm pain, inside between my elbow and shoulder. I could not stretch my arm out for several weeks without a stretchy,crampy pain in my inner elbow and throughout my inner arm. A few days after this I could not bend my index fingertip and could not turn my wrist in. No pain in this area, just loss of motor function. Then, in October the arm pain came back. Very similar circumstances, but now my thumb tip doesn't bend. I have had MRI's on neck, elbow, upper arm and nothing is noted but some minor disc degeneration. One Doctor said I had Parsonage-Turner syndrome after the first episode, but that usually involves severe shoulder pain and doesn't happen twice. I have a vague pain/soreness in my rhomboid muscle (?) (in back upper back, below shoulder) on the same side, but don't know if it's because I am overcompensating and causing it to hurt or if it is somehow related. Does anyone have any ideas?

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9 Replies:

  • This certainly could be Parsonage-Turner syndrome, affecting the anterior interosseus nerve. It is pretty rare for that problem to come back, but it can, and there is a hereditary form of the problem (hereditary neuralgic amyotrophy) which is recurrent. Other nerve problems, or pinched nerves in the neck, could also act this way. You should see a good neurologist and have a good EMG test.
    Anonymous 42,789 Replies
    • December 9, 2010
    • 08:17 PM
    • 0
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  • Wow! Thank you so much! You must be a physician? I have had 2 EMG's and EEG's, and the Doctors are still puzzled. I am being referred to the University of Utah for a consultation, but not until January. I am really frightened about how far this paralysis will go. Do you know the prognosis of hereditary neuralgic amytrophy? Can they test the gene to tell if that's what I have? It is my understanding that if it is parsonage turner, I will return to full function some day. Please share if you know more. This certainly could be Parsonage-Turner syndrome, affecting the anterior interosseus nerve. It is pretty rare for that problem to come back, but it can, and there is a hereditary form of the problem (hereditary neuralgic amyotrophy) which is recurrent. Other nerve problems, or pinched nerves in the neck, could also act this way. You should see a good neurologist and have a good EMG test.
    Heidilee 3 Replies
    • December 10, 2010
    • 01:31 AM
    • 0
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  • The weakness associated with Parsonage-Turner usually recovers completely but slowly, over months to a year. The same is true of the hereditary version. A good university center like Utah is where you should be seen. Waiting till January should be OK.Good luck.
    Anonymous 42,789 Replies
    • December 10, 2010
    • 09:17 PM
    • 0
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  • Thanks....I hope they can give me a concrete diagnosis. It's tough not having a pincer grasp!
    Heidilee 3 Replies
    • December 14, 2010
    • 04:16 AM
    • 0
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  • I just went to the Dr. for the same symptoms - pain in upper inner arm in Dec (which I thought was a pinched nerve), but then all of a sudden I couldn't bend my thumb or the top of my index finger. Now I can't stretch my arm out - it's bent at the elbow. It progressively got worst fast - all in 3 weeks. They want me to go for an MRI of the head! I'm also going to a neurologist next week.I also randomly woke up with a paralyzed vocal cord in July - all very odd. The vocal cord isn't bothering me anymore - I just can't yell, so I haven't pursued all the tests that need to be done to see why it became paralyzed. I did have a mri of the chest to see if a tumor was pressing on the nerve that goes to the vocal cord, but thankfully that came back negative.Coincidence? Paralyzed vocal cord (nerve damage) and now nerve damage in my arm.
    Anonymous 42,789 Replies
    • January 7, 2011
    • 10:03 PM
    • 0
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  • Hello-I wrote a reply the other day, but for some reason it didn't post. Last month I also had a severe pain in my upper inner arm...I then noticed my thumb wouldn't bend or the tip of my index finger. I also can't straighten my arm anymore. I thought I had a pinched nerve so I didn't see anyone until last week. The Dr went to get other Dr's to see my situation as he said it was very rare and uncommon. I'm going for my full neurologist workup in 2 weeks and an mri of the brain. Coincidently I woke up one morning in July with a paralyzed vocal cord - something happened to the nerve. Very odd - what are the chances that I have two very rare nerve issues? From what i've read online the nerve problem in the arm is called Kiloh-Nevin syndrome:"Anterior interosseous syndrome or Kiloh-Nevin syndrome is a medical condition in which damage to the anterior interosseous nerve, a motor branch of the median nerve, causes pain in the forearm and a characteristic weakness of the pincer movement of the thumb and index finger."
    Anonymous 42,789 Replies
    • January 9, 2011
    • 07:17 PM
    • 0
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  • I just received notice that you had replied. How did your MRI go? Please let me know what your diagnosis was. I have been to a specialist in Utah, but still don't feel like he was 100% sure of the diagnosis. Have you had any surgeries or been ill before this happened? They told me i had an auto-immune response triggered from a surgery I had two weeks prior to the episode.....resulting in inflamatory brachial plexopathy or parsonage turner. Has your vocal fold paralysis resolved? That must be quite frightening. I had no such trouble, but details of the other symptoms are exactly like mine. It has been almost year since my first episode and I can tell you that I think I am getting the use of my fingertip back. Wrist still won't pronate and thumb hasn't improved. Docs also said that if it happens again, prednazone will reduce the paralysis and the pain....but it needs to be taken quickly. Please keep in touch. You are the only person I have talked to who has identical symptoms to mine. Hello-I wrote a reply the other day, but for some reason it didn't post. Last month I also had a severe pain in my upper inner arm...I then noticed my thumb wouldn't bend or the tip of my index finger. I also can't straighten my arm anymore. I thought I had a pinched nerve so I didn't see anyone until last week. The Dr went to get other Dr's to see my situation as he said it was very rare and uncommon. I'm going for my full neurologist workup in 2 weeks and an mri of the brain. Coincidently I woke up one morning in July with a paralyzed vocal cord - something happened to the nerve. Very odd - what are the chances that I have two very rare nerve issues? From what i've read online the nerve problem in the arm is called Kiloh-Nevin syndrome:"Anterior interosseous syndrome or Kiloh-Nevin syndrome is a medical condition in which damage to the anterior interosseous nerve, a motor branch of the median nerve, causes pain in the forearm and a characteristic weakness of the pincer movement of the thumb and index finger."
    Heidilee 3 Replies
    • February 15, 2011
    • 02:18 AM
    • 0
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  • I hope someone can help me. I have been to four doctors (neurologist, 2 othopedic specialists and general physician) and they are all baffled. In April, I woke up with severe upper arm pain, inside between my elbow and shoulder. I could not stretch my arm out for several weeks without a stretchy,crampy pain in my inner elbow and throughout my inner arm. A few days after this I could not bend my index fingertip and could not turn my wrist in. No pain in this area, just loss of motor function. Then, in October the arm pain came back. Very similar circumstances, but now my thumb tip doesn't bend. I have had MRI's on neck, elbow, upper arm and nothing is noted but some minor disc degeneration. One Doctor said I had Parsonage-Turner syndrome after the first episode, but that usually involves severe shoulder pain and doesn't happen twice. I have a vague pain/soreness in my rhomboid muscle (?) (in back upper back, below shoulder) on the same side, but don't know if it's because I am overcompensating and causing it to hurt or if it is somehow related. Does anyone have any ideas?Have you found out anything yet? I'm dealing with the same thing right now and can't get any answers. It's so weird! The same exact things you describe is exactly what happened to me. No pain anymore but left hand weak and unable to bend the tip on my thumb on my own. Please let me know what you've found out.
    Anonymous 42,789 Replies
    • February 15, 2011
    • 04:46 PM
    • 0
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  • Hello, I have the same problem with the arms, at first i could not move both arms, then the pain set in for a couple day. Its PTS it all started with a virus in my blood. This was 5yrs ago I still dont have movement in right arm and left thumb is numb. I tear muscles in my neck trying to do something with the left arm (over working). I've looked into muscle transfer ( left to right to help lift) with not a good outlook. So I dont take much pain meds dont like the zombie feeling. Somone asked "when and were will it stop". I spoke with a doctor that told me there was a man who is on resperator, it affected his lack to move lung muscles. I was told by my doctor with the virus the nerves shut themselves to prevent futher infection. Hope this helps
    Anonymous 42,789 Replies Flag this Response
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