Hi Everyone.

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Permalink Reply by Sande White on November 2, 2009 at 3:26pm

Hi Lisa,

I too have not been diagnosed and so glad I found this site!
My VA Dr. wouldn't give me a referral to a neurologist and I was in intense pain.
I have requested another Dr at another facility even though I have to drive 85 miles to an appointment.
It will be worth it if I can get something done.
I am now on Gabapentin ( the Dr did give me a prescription for that - to cover hisself in case ). And as of today my pain has almost gone away but I dont know if its the meds or just going into remission for awhile!
Hang in there and don't let the Drs make you think you dont have this terrible pain.
I was so mad I wished the same pain on all the Drs that dismissed my pain as nothing--Just ride it out )
I am now waiting for an appt with the local Hospital Neurology Dept but an Intern there told me they only knew aout Epilepsy and Brain traumas....

I hope your pain is gone now but do get to DR early for diagnosis---I have suffered with unbearable pain because I didn't get on this sooner!

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Permalink Reply by Lisa Giardino on November 3, 2009 at 5:39pm

Sande White said:

Hi Lisa,

I too have not been diagnosed and so glad I found this site!
My VA Dr. wouldn't give me a referral to a neurologist and I was in intense pain.
I have requested another Dr at another facility even though I have to drive 85 miles to an appointment.
It will be worth it if I can get something done.
I am now on Gabapentin ( the Dr did give me a prescription for that - to cover hisself in case ). And as of today my pain has almost gone away but I dont know if its the meds or just going into remission for awhile!
Hang in there and don't let the Drs make you think you dont have this terrible pain.
I was so mad I wished the same pain on all the Drs that dismissed my pain as nothing--Just ride it out )
I am now waiting for an appt with the local Hospital Neurology Dept but an Intern there told me they only knew aout Epilepsy and Brain traumas....

I hope your pain is gone now but do get to DR early for diagnosis---I have suffered with unbearable pain because I didn't get on this sooner!

• ▶ Reply

Permalink Reply by Lisa Giardino on November 3, 2009 at 5:40pm

Lisa Giardino said:

Sande White said:

Hi Lisa,

I too have not been diagnosed and so glad I found this site!
My VA Dr. wouldn't give me a referral to a neurologist and I was in intense pain.
I have requested another Dr at another facility even though I have to drive 85 miles to an appointment.
It will be worth it if I can get something done.
I am now on Gabapentin ( the Dr did give me a prescription for that - to cover hisself in case ). And as of today my pain has almost gone away but I dont know if its the meds or just going into remission for awhile!
Hang in there and don't let the Drs make you think you dont have this terrible pain.
I was so mad I wished the same pain on all the Drs that dismissed my pain as nothing--Just ride it out )
I am now waiting for an appt with the local Hospital Neurology Dept but an Intern there told me they only knew aout Epilepsy and Brain traumas....

I hope your pain is gone now but do get to DR early for diagnosis---I have suffered with unbearable pain because I didn't get on this sooner!

• ▶ Reply

Permalink Reply by Lisa Giardino on November 3, 2009 at 5:52pm

Hi Sande,
I hve so busy todaywith y grandson , My daugher is working for a few mor weeks since she is having another so in Jan.. Youre right nobody really understands pain except that suffer the same or similar.My pain comes and goes , worse in my mouth.. I am a walking, breathing miracle, I am still alive.. If youread my past history especially the cancer I had was caught in time. I am 6 yrs cancer free.. I had half of my left kidney removed.. Small price for extra life. I read alot tonight about TN.. I have sympthoms the same as what emedicinehealth.com discribed about Tn.. Have you looked up information about this disorder as well. I hopeyou find what your dignose s is as well. I wish you well and Gods Blessings to you and evyone on the site.. I have an appointment Nov 17th, I am nervous but determined to find out whats wrong.. As for teatment I will decided when I find out What I have.. Im looking forward to a longer life of good stuff.. Does heat treatment help the pain... Lisa G

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Permalink Reply by Lisa Giardino on November 3, 2009 at 5:53pm

Lily said:

Hi Lisa,
Welcome! I hope that you make yourself at home here. What does your primary care physician say about these pains? Are you able to ask for a referral to a neurologist? They may be able to tell you what it is that you are experiencing.
Few here would venture a guess at it, it really requires a specialist to diagnose.
I hope that you are able to work with your doctors to find a diagnosis. In the meantime, this is a good place to come and learn about how this disease affects people, and what is done to treat it, and related, diseases.
Warmest regards,
Lily

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Permalink Reply by Lisa Giardino on November 3, 2009 at 5:53pm

Lisa Giardino said:

Lily said:

Hi Lisa,
Welcome! I hope that you make yourself at home here. What does your primary care physician say about these pains? Are you able to ask for a referral to a neurologist? They may be able to tell you what it is that you are experiencing.
Few here would venture a guess at it, it really requires a specialist to diagnose.
I hope that you are able to work with your doctors to find a diagnosis. In the meantime, this is a good place to come and learn about how this disease affects people, and what is done to treat it, and related, diseases.
Warmest regards,
Lily

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Permalink Reply by Lisa Giardino on November 3, 2009 at 6:03pm

Hi Lily, Thank you for your advice, My primary doc is fairly new to me. I asked her for a MRI which cme back normal.. I even picked up the tests results myself pesonally. I wanted to be aDoctor myself so studing my medical problems helped me cope. I prefered to be the doc then the medicaal delight the docs actd like when I see some, especially telling them I had cancer surgery.. Eyes light up like I gave them gold in their hands... I wish you the best, Have a good night.. I am glad I googled this websight. Lisa G

Lisa Giardino said:

Lisa Giardino said:

Lily said:

Hi Lisa,
Welcome! I hope that you make yourself at home here. What does your primary care physician say about these pains? Are you able to ask for a referral to a neurologist? They may be able to tell you what it is that you are experiencing.
Few here would venture a guess at it, it really requires a specialist to diagnose.
I hope that you are able to work with your doctors to find a diagnosis. In the meantime, this is a good place to come and learn about how this disease affects people, and what is done to treat it, and related, diseases.
Warmest regards,
Lily

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