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Old 01-20-2013, 03:09 PM #1
giapet giapet is offline
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Question New and As of yet Undiagnosed

Hello everyone!

I'm new to the forums, and a very friendly member directed my post here, though I've not necessary been diagnosed with peripheral neuropathy (it has been discussed though). If this was a dear Abby column, I'd sign it "Really, Really Frustrated."

I've had back issues since I was 13. I woke up one day and couldn't move my head because my neck hurt so badly. I saw a bunch of doctors, including a neurologist, had physical therapy done, etc. I don't remember much of the details, but I was diagnosed with chronic muscle spasms. I'd also lost some curvature in my neck. And that was that. I just lived with it and became used to the back pain and knots.

Fast forward to March of 2012. I woke up with some nasty pain between my shoulder blades. My shoulder was throbbing. I couldn't turn my head. My hands were tingling painfully (ring and pinky fingers mostly), as was my middle back on my left side. After a few weeks of no relief, I saw my PCP, who sent me to physical therapy.

Physical therapy seemed to make my neck pain worse. I was having HORRIBLE tension headaches. The tingling in my right hand didn't change, but the tingling in my left hand started to encompass my entire hand, not just two fingers. My left arm was starting to buzz, as well, and nerve pain was shooting into my palm. My back was still tingling, and worst of all, the back of my head started going numb and itching incessantly, like bugs were crawling on it.

In June, after 1.5 months, I quit PT and scheduled to see an Ortho.

The ortho did some x-rays and a cervical MRI. The curvature in my neck was now non-existent, with some reversal of curvature. I had 3 partially bulging discs (c4-c6, I think). However, my doc didn't think they was the cause of my tingling. The nerves were fine. So, he gave me some NSAIDs and a muscle relaxer and said to see a neuro if nothing improved.

I schedule to see a neuro in October. The numbness in my right hand was gone and my back and neck were back to normal (still achy but normal achy for me), but my head and back were still going numb, my left hand was still going numb, the weird sensations in my arm continued, and my crown of my head still had the incessant itch.

I had a brain MRI which was clean. Blood work was all normal. I experience little hand numbness in my left hand now after wearing a brace for Carpal Tunnel for a month or two as recommended by my neuro.

However, the head numbness was started to encompass my entire head... it started in the back of my head, then moved up towards the crown, then my ear lobes, temple, until finally, one day, my entire face was numb from cheeks to forehead. The itching also continued without fail. I was still having tension headaches, and every so often, my head would get fuzzy, like it was floating away from my body.

Also to note, none of my numbness is constant. It happens in short bursts, usually never longer than 15 minutes, but those bursts can happen every 30 minutes to an hour on a bad day vs. two to three times on a good day. Sometimes I will have burning pain, but it's rare. The numbness has only woken me up from sleep a few times, and thats because it was coming with nerve pain. Sometimes, random places will go numb or tingle (like my foot when I sat down on a couch or above my eyebrow) and then it will never happen again.

The neuro put me on gabapentin, which made me suicidally depressed, so we switched to Lyrica (50mg once a day), which has helped. If I skip a single night's dose, though, my head is a numb, itchy mess by morning.

They have NO IDEA what's wrong with me. One of the neuros consulting thought maybe it was Occipital Neuropathy (not neuralgia, since the pain is the least of the issues), but that's it. One neuro actually said I should just deal with it since it's not affecting my daily life. I dunno how you guys feel about that response, but as a 25 year old woman who's head and face go numb and itchy without meds, I find it to be bull.

Any thoughts? So sorry about the novel length!

G
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Old 01-20-2013, 03:33 PM #2
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Sallysblooms Sallysblooms is offline
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Hello, I am sorry the doctors you have seen have not been helpful. It is a lot of work to find good ones, no matter what is wrong. With my CFS and now my Dysautonomia, reg. doctors have been no help. The opposite. Integrative MD's are the only doctors that have understood what is wrong and knew what to do with testing and supplements.
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Old 01-22-2013, 09:16 PM #3
danikai09 danikai09 is offline
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It sounds like you could have TOS. Have you had any EMG/Nerve tests done? You said the nerves were fine, so have you tested them? If your nerves in your arm are coming up normal in an EMG, the compression could be more in the neck area. I have horrible head problems with my TOS - including numbness (though mine is on the right side [dominant symptom side] mostly).

Does the pain in your hand / numbness get worse when you hold your hands over your head? Try just sticking them straight in the air and hold them for 3 minutes then see if your symptoms are irritated when you do that.

Don't listen to doctors who tell you to live with it.

I'm 26 and have no use in my pinky or ring fingers, my hands are atrophying, my shoulders are atrophying, I have migraines and facial numbness that affect my vision and hearing as well.. I don't intend to live with it until I've gone to the ends of the earth to find away to finally start living without it!
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Old 01-26-2013, 12:34 PM #4
giapet giapet is offline
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Quote:
Originally Posted by danikai09 View Post
It sounds like you could have TOS. Have you had any EMG/Nerve tests done? You said the nerves were fine, so have you tested them? If your nerves in your arm are coming up normal in an EMG, the compression could be more in the neck area. I have horrible head problems with my TOS - including numbness (though mine is on the right side [dominant symptom side] mostly).

Does the pain in your hand / numbness get worse when you hold your hands over your head? Try just sticking them straight in the air and hold them for 3 minutes then see if your symptoms are irritated when you do that.

Don't listen to doctors who tell you to live with it.

I'm 26 and have no use in my pinky or ring fingers, my hands are atrophying, my shoulders are atrophying, I have migraines and facial numbness that affect my vision and hearing as well.. I don't intend to live with it until I've gone to the ends of the earth to find away to finally start living without it!
Thanks for the response and sorry it took me so long to respond back!

I have not had any EMG or nerve tests done. It had been in our plan, but because most of my hand/ arm numbness resolved, they nixed it as being necessary. Because my symptoms in my head are intermittent, they also opted not to do any type of nerve testing for my cervical or cranial nerves.

I am looking to get a second opinion. I can't imagine that the head numbness just coincidentally started with my back/ neck pain (or that it started when I was having PT that was causing my neck pain to be worse), and I really do not want to stay on meds without a diagnosis or if there's another way to solve the problem. I'm also obviously having pain associated with the bulging discs, so I'm kind of amazed that the ortho specialist just shrugged it off.

Thanks again for the response. I hope you get relief, too!
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Old 01-26-2013, 12:36 PM #5
giapet giapet is offline
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Quote:
Originally Posted by Sallysblooms View Post
Hello, I am sorry the doctors you have seen have not been helpful. It is a lot of work to find good ones, no matter what is wrong. With my CFS and now my Dysautonomia, reg. doctors have been no help. The opposite. Integrative MD's are the only doctors that have understood what is wrong and knew what to do with testing and supplements.
Thanks for your response. I have had several people tell me to see integrative doctors or consider something like acupuncture. I haven't had a good experience with my regular specialists so far, so I am considering it.
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