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Unread 01-18-2013, 01:41 PM   #1
giapet
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Question New and Confused

Hello everyone!

I'm new to the forums. Is this was a dear Abby column, I'd sign it "Dumbfounded."

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, had physical therapy done, etc. I don't remember much of the details, but I was diagnosed with chronic muscle spasms. I also had 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 (ring and pinky fingers mostly), as was my middle back on my left side. After a few weeks or 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. My left arm was starting to buzz, nerve pain was shooting into my pain, my back was still tingling, and worst of all, the back of my head started going numb.

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, 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, and the weird sensations in my arm continued. Oh, and the crown of my head was itching LIKE mad. It started in May or June, but I never thought anything of it until the numbness started.

I had a brain MRI which was clean. Blood work was all normal. I experience little hand numbness these days after wearing a brace for Carpal Tunnel for a month or two. Head numbness was started to encompass my entire head, though... 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. Itching continued. I am still having tension headaches along, and every so often, my head will get fuzzy, like it's 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. Sometimes I will have burning pain, but it's rare and never in the same place. The numbness has only woken me up from sleep a few times, and thats because it was coming with nerve pain.

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, my head is a numb, itchy mess by morning.

They had 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, I find it to be bull.

Any thoughts? So sorry about the novel length... I'm just so, so frustrated and at the end of my rope.

G
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Unread 01-19-2013, 11:31 PM   #2
Leesa
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Hi ~ You'd probably get more responses if you posted this either in Peripheral Neuropathy, or perhaps in Spinal Disorders. This doesn't generally get TOO many responses from people who know too much about this kind of thing.

So try Peripheral Neuropathy and/or Spinal disorders. Either or BOTH would be great places to post. You could just copy & paste both these.

God bless and I hope you get lots of replies. Personally I don't have a clue, and I'm a spinal patient! LOL I wish I could help. Hugs, Lee
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Unread 01-20-2013, 03:13 PM   #3
giapet
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Quote:
Originally Posted by Leesa View Post
Hi ~ You'd probably get more responses if you posted this either in Peripheral Neuropathy, or perhaps in Spinal Disorders. This doesn't generally get TOO many responses from people who know too much about this kind of thing.

So try Peripheral Neuropathy and/or Spinal disorders. Either or BOTH would be great places to post. You could just copy & paste both these.

God bless and I hope you get lots of replies. Personally I don't have a clue, and I'm a spinal patient! LOL I wish I could help. Hugs, Lee
Thanks, Lee! I'll definitely do that.
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Unread 01-31-2013, 03:05 PM   #4
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Quote:
Originally Posted by giapet View Post
Hello everyone!

I'm new to the forums. Is this was a dear Abby column, I'd sign it "Dumbfounded."

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, had physical therapy done, etc. I don't remember much of the details, but I was diagnosed with chronic muscle spasms. I also had 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 (ring and pinky fingers mostly), as was my middle back on my left side. After a few weeks or 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. My left arm was starting to buzz, nerve pain was shooting into my pain, my back was still tingling, and worst of all, the back of my head started going numb.

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, 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, and the weird sensations in my arm continued. Oh, and the crown of my head was itching LIKE mad. It started in May or June, but I never thought anything of it until the numbness started.

I had a brain MRI which was clean. Blood work was all normal. I experience little hand numbness these days after wearing a brace for Carpal Tunnel for a month or two. Head numbness was started to encompass my entire head, though... 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. Itching continued. I am still having tension headaches along, and every so often, my head will get fuzzy, like it's 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. Sometimes I will have burning pain, but it's rare and never in the same place. The numbness has only woken me up from sleep a few times, and thats because it was coming with nerve pain.

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, my head is a numb, itchy mess by morning.

They had 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, I find it to be bull.

Any thoughts? So sorry about the novel length... I'm just so, so frustrated and at the end of my rope.

G
Hi Giapet... LOVE your name.

Have you considered low vitamin B12? Years ago back pain was often associated with low vitamin B12, but today when doctors most commonly rely on prescription drugs, B12 is all too commonly overlooked as a factor.

If your mother was low in vitamin B12 when she was carrying you, then you would come into the world low in B12 yourself.

At one point many years ago when I was in terrible pain most of the time, unable to sleep because of the pain, I tried to kill myself. But, I was discovered in my car with the exhaust funneled in. So, I was rushed to hospital by an ambulance and EMT team. There, a vitamin B12 test was performed and it showed I had a "profound deficiency".

Thereafter I had some B12 replacement therapy, and to my amazement, and JOY, my back pain went largely away... as well as my leg pain, shoulder pain, etc.

B12 is safe, so you could try it. If you decide to try it, be sure to get the methylcobalamin form, in sublinguals.

Karen
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