I saw a Neurologist yesterday who wants me to have a PMP22 test done - Peripheral Myelin Protein #22. At the time of the visit, I requested information and an explanation as to what this test involves, before agreeing to it. He directed me to LOOK IT UP ON THE INTERNET. Well, not being a Genetic Scientist savvy in DNA Coding, I'm unable to come up with any data that is comprehensive to me. I was able to gleem some very basic information such as it has to do with a genetic, heredity disease that attacks the myelin sheath in peripheral nerves. I have no idea how this test is performed but it doesn't sound like a simple blood test. I'm thinking tissues samples. But from where? The only other pieces of info I've been able to vaguely assimilate is: mutations in the PMP22 are linked to palsy diseases and Charcot-Marie-Tooth Disease.
If someone here has had this done or can provide more comprehensive info than the below link .... Please chime in!!!!
http://ghr.nlm.nih.gov/gene/PMP22
Note: I've been tested for EVERY auto-immune disease/disorder under the sun for the last several years, with negative results.
PMP22 Test
PMP22 Test
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: PMP22 Test
"Look it up on the internet"??? Seriously????
Sounds like your neuro is grasping for straws. Fuggetaboutit.
Hugs.
Sounds like your neuro is grasping for straws. Fuggetaboutit.
Hugs.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: PMP22 Test
Thank you, Lernica! I left a message at his office to call me. I am seriously considering having the test done, but I want the particulars first.
At the very least, I may be able to get him and my PCP to move on from the mystery auto-immune illness.
At the very least, I may be able to get him and my PCP to move on from the mystery auto-immune illness.
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: PMP22 Test
I don't know I tried to read this and was pretty confused but it looks like a DNA test so I'm assuming it can be tested from blood.
I have to agree with Lernica though. If a doctor ever told me to look it up on the internet that would be a done deal for me.
I went to a neurologist once who wanted to do a nerve biopsy on me! My grandfather had this done one time. He has peripheral neuropathy from an unknown cause (likely chemical exposure from his chemist days pre-protection gear). He says it's the worst thing he ever did. Needless to say I did not go back. She was convinced I had some abnormal type of myoneuropathy due to sjogrens (even though my bloodwork was negative for that).
Some doctors just can't believe something exists if they can't find a cause to it.
I have to agree with Lernica though. If a doctor ever told me to look it up on the internet that would be a done deal for me.
I went to a neurologist once who wanted to do a nerve biopsy on me! My grandfather had this done one time. He has peripheral neuropathy from an unknown cause (likely chemical exposure from his chemist days pre-protection gear). He says it's the worst thing he ever did. Needless to say I did not go back. She was convinced I had some abnormal type of myoneuropathy due to sjogrens (even though my bloodwork was negative for that).
Some doctors just can't believe something exists if they can't find a cause to it.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Re: PMP22 Test
Hi Faith,
Yes, you're correct. It is a blood test. I was able to find out a tiny bit more information by switching search engines (from yahoo to google). Interpretting what I could - my symptoms just don't match. I don't have muscle weakness. I have muscle tightness. Futhermore, my symptoms definitely don't match up with Charcot-Marie-Tooth Disease OR any type of palsy disease. Demyelination of my lower lumbar and sacral nerve roots only??? I don't think so.
However, I am willing to have this test done; if only to MOVE ON from from the ever-elusive auto immune disease theory.
Yes, you're correct. It is a blood test. I was able to find out a tiny bit more information by switching search engines (from yahoo to google). Interpretting what I could - my symptoms just don't match. I don't have muscle weakness. I have muscle tightness. Futhermore, my symptoms definitely don't match up with Charcot-Marie-Tooth Disease OR any type of palsy disease. Demyelination of my lower lumbar and sacral nerve roots only??? I don't think so.
However, I am willing to have this test done; if only to MOVE ON from from the ever-elusive auto immune disease theory.
Thank you. This is the third time I've had a "medical professional" say that to me. It makes feel like a crazy person!!!!Faith wrote:I have to agree with Lernica though. If a doctor ever told me to look it up on the internet that would be a done deal for me.
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.