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Old 02-09-2015, 06:56 PM #11
jenng jenng is offline
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Default Hi Ariadne,
Have you checked out thoracic outlet syndrome, same site different forum? See if reading some of the threads ring a bell. Unfortunately it is not always easily diagnosed by MRI or electrodiagnostic testing. Worth a look.
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Idiopathic Sensorimotor Polyneuropathy
Atypical Migraine
Chiari 1 malformation 7 mm
PLIF L5-S1 Sept. 2013

Lumbar MRI March 2013: degenerative changes from L3 to S1. L3 and L4 have tiny annular tears with disc bulge. L5-S1 bilateral pars defects anterolisthesis (spondylosis/spondylithesis?) I have an annular tear here too, along with a conjoined left L5-S1 nerve root. Mild effacement of the thecal sac at the origins of the bilateral S1 nerve roots, left greater than right. Mild bilateral Neural foraminal stenosis.
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Old 02-09-2015, 09:49 PM #12
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Thanks. I don't think it's TN. Symptoms don't quite match as typical, carbamazapine didn't help with pain, and ibuprofen definitely helps. I'm 37 too so TN unlikely at my age!

Discontinued Carbamazapine and it made no difference to facial pain which tbh is no longer a big issue right now - ibuprofen has it under control. Main thing now is tingling, numbness in hand. Other symptoms still there but hand is worst problem as it is quite disabling day to day. (On plus side my left hand becoming nifty of necessity!)

Going back to GP tomorrow for another looksee.
Am in UK so insurance not an issue - God bless the NHS.
It's good to be off carbamazapine; from a side efx standpoint, it's bad news. And if you really had TN, your description would be of a much more severe pain. But I'd still get that MRI asap. Do you have any general weakness or unusual fatigue over all? Any balance issues?

They still don't know what I have (besides TN). I went from MS to cancer (paraneoplastic syndrome) to now maybe ALS or some other motor neuron disease. I'm still hoping that it's 'only' some form of neuropathy.
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Old 02-10-2015, 07:07 AM #13
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Had a good talk to doctor today
He's agreed carbamazepine not for me.

Going to try amitryptilene(sp?!) for pain and to help me sleep.

Also antibiotic in case there is an infection going on in lypmh / glands as my neck and ear have both got some tenderness & swelling. The fact that ibuprofen helps might suggest something swollen or inflamed is causing a problem.

And has ordered an MRI.

Feeling hopeful that the right steps are being taken
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Old 02-10-2015, 11:28 AM #14
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Had a good talk to doctor today
He's agreed carbamazepine not for me.

Going to try amitryptilene(sp?!) for pain and to help me sleep.

Also antibiotic in case there is an infection going on in lypmh / glands as my neck and ear have both got some tenderness & swelling. The fact that ibuprofen helps might suggest something swollen or inflamed is causing a problem.

And has ordered an MRI.

Feeling hopeful that the right steps are being taken
Amitryptiline is anti-depressant that's sometimes used for neuropathic pain. But unlike ibuprofen it doesn't really reduce swelling or inflammation. Despite cutting out the carbamazepine, it sound like your GP thinks it's nerve related.

Had you been sick prior to all of this? There's something called "Post Viral Syndrome" that can cause the symptoms you're experiencing.
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Old 02-10-2015, 11:37 AM #15
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There is also some new evidence that amitriptyline may encourage peripheral nerves to regrow:

http://neurotalk.psychcentral.com/post529063-1.html
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"Thanks for this!" says:
Ariadne (02-10-2015), jenng (02-10-2015), Lara (02-10-2015)
Old 02-10-2015, 01:36 PM #16
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Amitryptiline is anti-depressant that's sometimes used for neuropathic pain. But unlike ibuprofen it doesn't really reduce swelling or inflammation. Despite cutting out the carbamazepine, it sound like your GP thinks it's nerve related.

Had you been sick prior to all of this? There's something called "Post Viral Syndrome" that can cause the symptoms you're experiencing.
No I wasn't ill before this started.

Dr said on amitriptyline that it will help me get some sleep and can also benefit nerve pain. It is deffo nerve pain I am experiencing, just that there is a possibility the cause might be to do with an infection e.g. something swollen pressing on a nerve or something. Frankly I think the antibiotics are worth a try even if that's an unlikely cause - right now I'd try just about anything!
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