Discussions By Condition: I cannot get a diagnosis.

severe pain, numbness, pin and needles

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: moonswept
  • November 24, 2007
  • 06:47 PM

ok so here's the deal....

I am a 22-year-old woman. A little overweight but otherwise healthy.

In August, my wrist started to hurt out of the blue one day. It was a severe, locking pain, during which I was unable to move or use my wrist. This pain continued, and for the following few days I also experienced numbness in my ring and pinkie fingers, and pins and needles in my thumb, index and middle fingers. When I went to the Doc he said it was Carpal Tunnel and Tendonitis together creating this. So, he put me on Mobic (for swelling) and in a wrist brace, both for a month. When that did nothing, I went back. He took x-rays which seemed to show that my ulna is too short (Spondyloperipheral Dysplasia) and is rubbing against the radius causing bone breakdown. After poking around in my wrist and elbow, he said that he also believed that I had nerve entrapment of the ulnar and medial nerves. I had a nerve conduction test done and it showed nothing. But that doctor suggested Psoriatic Arthritis. He said that even if that's not the answer, he strongly believes that it is something auto-immune. This seemed to make sense... it explains a lot. Psoriasis runs in my family and so does Crohn's Disease, which is also auto-immune and can cause a form of arthritis. My regular doc disagrees. I allowed him to give me a cortisone shot. It has greatly reduced my pain but I can still feel something going on in there. The doc is concerned that all the pain and numbness was causing by the swelling, which is now being controlled by the cortisone... and he is afraid that the bone will continue to deteriorate and I won't be able to feel it until something drastic happens. So he wants me to see a hand specialist/surgeon and a rheumatologist.

At the rate I'm going, I am going to have 4 different professional opinions that can't decide how to fix me. Has anyone else experienced anything like this? Any suggestions would be greatly appreciated.

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12 Replies:

  • Hello, I'm sorry that I can't help you with your symptoms, but I am bumping this up because I can't believe that no one has answered since you wrote this in November. Yes, I have been through doctors not knowing how to treat me for something, I'm going through it now, and I'm also going through not even having a diagnosis for my situation, too...very frustrating to say the least. Well, how did your appointments go? What did you find out? Are you still having problems with your wrist and hand?
    Anonymous 42789 Replies Flag this Response
  • Have you had your blood sugar checked? Could be a symptom of type 2 diabetes...
    Anonymous 42789 Replies Flag this Response
  • my daughter just went thru this to. you need to have a RA blood test run to check for Rheumatoid arthitis. She is 28 and hers is high along with her sed rate. Predisone makes her feel better. They are trying her on new meds. Hers started the same way. I hope this helps.
    Anonymous 42789 Replies Flag this Response
  • You might also want to be tested to see if you are HLA positive. Try here: http://www.webmd.com/a-to-z-guides/tissue-type-test
    aquila 1263 Replies Flag this Response
  • Check around your area and try to find a very good chiropractor. A combination of that and acupuncture would be the least evasive.
    Monsterlove 2921 Replies Flag this Response
  • Dear Moonswept,I, too, have severe numbness in the right pinky, ring, and middle fingers. The pain is excruciating. I had a nerve conduction test to learn nothing. I have braces I wear at night. For awhile, they worked. Not anymore. Vicodin, Gabapentin, 800mg Ibuprofen...none of it works.I would love to cure this. I was told it is Carpal Tunnel although I do not have thumb numbness/pain. It is making life difficult. I am constantly in pain and in a edgy mood. I am not like that normally.If you have taken this a step further since you posted, please reply and let me know of any successes you have had.
    Anonymous 42789 Replies Flag this Response
  • Hello, I'm sorry that I can't help you with your symptoms, but I am bumping this up because I can't believe that no one has answered since you wrote this in November. Yes, I have been through doctors not knowing how to treat me for something, I'm going through it now, and I'm also going through not even having a diagnosis for my situation, too...very frustrating to say the least. Well, how did your appointments go? What did you find out? Are you still having problems with your wrist and hand? oh my gosh i have the same symptoms right down to the pinched nerve in ulnar only now my shoulder joint and arm hurt and my hands are red swollen and they itch. i am 40 yrs old im scared and cant afoord to go to doctor what is wrong with me and the other person help us:mad:
    catdog7 2 Replies
    • October 20, 2009
    • 06:23 AM
    • 0
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  • oh my gosh i have the same symptoms right down to the pinched nerve in ulnar only now my shoulder joint and arm hurt and my hands are red swollen and they itch. i am 40 yrs old im scared and cant afoord to go to doctor what is wrong with me and the other person help us:mad:Lyme disease is a possibility. I have carpal tunnel in both hands, my joints will ache off and on, muscle weakness and so on. Every patient has different symptoms but those diagnosed later often have symptoms related to central nervous system, neurologic and vascular. I tested CDC positive for Lyme disease this year, but before you ask your doctor for the test, research the controversy over Lyme disease. This is a disease you want to be educated on before you get the testing done. You may end up having to find an LLMD in your state in order to be tested and treated properly. Visit ILADS.org and watch the videos and see if you can get the DVD, "Under Our Skin." I bought the book, "Cure Unknown," which is also helpful but actually just found it on Google Books so you can read it on-line. Lyme is debilitating if you don't treat it properly and it can start out with the smallest symptoms that will eventually get bigger especially if you have some assault to the immune system.
    Anonymous 42789 Replies
    • October 20, 2009
    • 02:49 PM
    • 0
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  • Lyme disease is a possibility. I have carpal tunnel in both hands, my joints will ache off and on, muscle weakness and so on. Every patient has different symptoms but those diagnosed later often have symptoms related to central nervous system, neurologic and vascular. I tested CDC positive for Lyme disease this year, but before you ask your doctor for the test, research the controversy over Lyme disease. This is a disease you want to be educated on before you get the testing done. You may end up having to find an LLMD in your state in order to be tested and treated properly. Visit ILADS.org and watch the videos and see if you can get the DVD, "Under Our Skin." I bought the book, "Cure Unknown," which is also helpful but actually just found it on Google Books so you can read it on-line. Lyme is debilitating if you don't treat it properly and it can start out with the smallest symptoms that will eventually get bigger especially if you have some assault to the immune system.thank you nenth, i appreciate the input, i will check it out i also noticed now the tips of my toes are going numb as well and the tops of my feet are red. but thank you for replying!!
    catdog7 2 Replies
    • October 21, 2009
    • 08:06 AM
    • 0
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  • thank you nenth, i appreciate the input, i will check it out i also noticed now the tips of my toes are going numb as well and the tops of my feet are red. but thank you for replying!!I probably should have mentioned that cortisone is completely contraindicated in Lyme disease. I had a cortisone shot in my shoulder because I had burning pain so bad behind the left scapula that I could not raise my arm. After that because I the arthritis pain was so bad I took about four or five rounds of Medrol dose pack. It was after this that I found out I had Lyme disease and that steroids make Lyme much worse. The steroids inhibit the body's immune system and that actually allows the Lyme to take over.I only left a brief response before, but I think maybe I should let you know that mine began with mild carpal tunnel in one hand which then moved to both hands, then my left shoulder blade began to burn and became weak to the point I could not lift my arm to blowdry my hair. The other symptoms I have had migraines, migrating arthritis in places where I had never before had pain in my life, such as my hips. I also got muscle weakness. Walking up one flight of stairs was like doing 50 squats. Oddly enough about 2 years before the most serious symptoms began, I showed a relative how one of my calves seemed to have lost muscle in one area and I now think that was part of the Lyme. I also got severe orthostatic hypotension. Every time I got out of bed I would have to hold on to the post or sit down a few times for the next hour so I didn't faint, and it occurred every time I went from sitting to standing.So while there are many symptoms to Lyme and many conditions that can be causing yours, I figured it was worth letting you know in case any of these happen to show up later on. They can come on gradually but when it finally hits, it hits hard. You have to speak to an LLMD (Lyme Literate Medical Doctor) for proper testing and diagnosis and I recommend reading the book, "Cure Unknown." Your normal physician or infectious disease doctor is not capable of diagnosing it properly trust me on this. I went to over 10 physicians, including specialists, who did not diagnose me properly and never even thought of Lyme. Even when it was shown I had Lyme through positive blood tests, the infectious disease doctor said, "I don't trust LabCorp," and would not treat me. So I'm posting this message because people need to know what is going on with Lyme disease. It can be cured, but in later cases it is more difficult to cure. If you want to do your own testing because you are tired of dealing with doctors or insurance, you can go to Private MD and order the Lyme Western Blot test for around $60. That is what I finally did but I also ordered the Lyme AB test. When it came back positive I took the results to my general who also ran a test and that came back positive as well. Private MD lets you choose the LabCorp in your area that you want to test at and will send you the results via an e-mail so it's very private. I'm glad I did it. I would be stuck nowhere if I hadn't gone out on my own and done the testing. LabCorp is better than some other labs because they will show you the bands that show up positive on your western blot and these are important in Lyme disease. They aren't the most thorough on band testing, but for the price it's a good test and they do test it according to CDC standards. There is another Lab in California called IgeneX. They will test all of the bands but they are much more expensive. However, if you have the money to do it, I would go through Igenex. It will cost about $350 there for the testing you need and if you want to test for the coinfections which can and often do occur then it's $800 or more. You can order the kit by calling them and then just having your regular doctor's lab draw the blood for you and you mail it in with your payment. I did ask someone which tests you should draw because I was a bit confused on their form which ones to get and she said the basic is fine which is $260. Anyway that is just some info. for you should you decide you want to try that. I have never regretted doing this. It saved my life.
    Anonymous 42789 Replies
    • October 25, 2009
    • 04:25 PM
    • 0
    Flag this Response
  • Okay, so I have found myself an LLMD who is treating me and I am seeing improvement. Today I am able to contemplate not having to use pain medication at some point because the achiness and burning I have felt the last two years is beginning to subside due to the Lyme treatment. The light-headedness is entirely gone at this point. Ringing in my ears has lessened but not entirely disappeared yet. I could not go shopping because it would wear me out so badly and after 30 minutes my hips would start to ache and then my knees and my muscles would start to cramp up. I felt like I had the achiness you get with the flu every single day. I have improved by 50% just due to antibiotic treatment. You should know that if it is Lyme and they put you on antibiotics you will get worse at first because of what is called a Jarisch-Herxheimer reaction. The bacteria die and release a toxin and your body is often unable to rid itself of the toxins fast enough so you actually get sicker at first but as the treatment goes on, the symptoms lessen. You tend to have the worst reactions during the bacteria's replication cycle which is every 4 to 6 weeks, so you don't feel miserable the entire time. You will have flare ups every 4 to 6 weeks and these flare-ups will diminish in intensity as the treatment progresses. It's been two months for me now and I can do so much more than I could do before. My treatment will most likely be anywhere from 6 months to 3 years, but I'm intent on completing it.I have now tested CDC positive twice more through LabCorp as well as positive through IgeneX with eight bands positive. I recommend going through Igenex as this is the lab that an LLMD would use. LabCorp was fine for me, but in many cases you can get a false negative through LabCorp or the labs your physician will use because they do not test all the bands, nor do they always use the testing for the species found in the U.S. Igenex specializes in tick-borne diseases, so although your insurance will most likely not cover it, it is much more specific than other laboratories because it covers so much more.Lyme is excrutiatingly painful and depressing. There were many times I wanted to die just to be out of the pain. I feel certain I would not be walking today if I had not found out that it was Lyme. I was in that bad of shape. I can't tell you how important it is to find an LLMD. There are so few of them, but they are the only physicians qualified to diagnose you in my opinion. You can visit ILADS.org and call the number there to ask for the closest LLMD in your area. You may have to travel out of state. that is what I had to do, but it was worth it. ILADS will also provide some information on Lyme disease and symptoms and many other things. In my opinion, they are the ones at the forefront for treating Lyme disease. If it's not Lyme, I do hope you find out what it is.
    Anonymous 42789 Replies
    • February 16, 2010
    • 06:36 AM
    • 0
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  • ok so here's the deal....I am a 22-year-old woman. A little overweight but otherwise healthy.In August, my wrist started to hurt out of the blue one day. It was a severe, locking pain, during which I was unable to move or use my wrist. This pain continued, and for the following few days I also experienced numbness in my ring and pinkie fingers, and pins and needles in my thumb, index and middle fingers. When I went to the Doc he said it was Carpal Tunnel and Tendonitis together creating this. So, he put me on Mobic (for swelling) and in a wrist brace, both for a month. When that did nothing, I went back. He took x-rays which seemed to show that my ulna is too short (Spondyloperipheral Dysplasia) and is rubbing against the radius causing bone breakdown. After poking around in my wrist and elbow, he said that he also believed that I had nerve entrapment of the ulnar and medial nerves. I had a nerve conduction test done and it showed nothing. But that doctor suggested Psoriatic Arthritis. He said that even if that's not the answer, he strongly believes that it is something auto-immune. This seemed to make sense... it explains a lot. Psoriasis runs in my family and so does Crohn's Disease, which is also auto-immune and can cause a form of arthritis. My regular doc disagrees. I allowed him to give me a cortisone shot. It has greatly reduced my pain but I can still feel something going on in there. The doc is concerned that all the pain and numbness was causing by the swelling, which is now being controlled by the cortisone... and he is afraid that the bone will continue to deteriorate and I won't be able to feel it until something drastic happens. So he wants me to see a hand specialist/surgeon and a rheumatologist.At the rate I'm going, I am going to have 4 different professional opinions that can't decide how to fix me. Has anyone else experienced anything like this? Any suggestions would be greatly appreciated.Hi,Just thought you should be aware that the neck can occasionally contribute / cause pins and needles and numbness in the fingers (even if there is a local problem in the wrist / hand). Usually this is associated with neck pain / stiffness. Hope that helps and good luck,PhysioAdvisor
    PhysioAdvisor 93 Replies
    • February 18, 2010
    • 01:00 AM
    • 0
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