[ShaggyChic_1201]

I'm looking for thoughts and experience / advice, not a diagnosis.

• Quick background - I have RSD/CRPS in right arm + spinal cord stim. In Oct, developed mild pain in left hand, plus new pain (that didn't feel the same as my usual pain) in right. Neurologist in Dec did office eval and said my toes were not producing pain signals and I had SFPN. No confirming tests, but it sounded right to me. Neurodoc started me on gabapentin.
  
• In Jan, (1 month later) pain had outstripped my med routine and I called neurodoc. He said to add 300 mg of gabapentin (going to 1800). I did. I felt better.
  
• In Feb (1 month later) - same thing. Pain had intensified beyond Jan. Called neurodoc who said he'd see me at the end of March (first available). Getting no advice, I figured, well if going up on gabapentin helped last month, maybe it will help again this month. Went up to 2100. It helped a tiny bit.
  
• Today (2 weeks later) I saw GP who was annoyed at neurodoc and said, that's not how PN works. You see tiny changes over years, not galloping ones you're describing. In his mind there were 3 options:

1. Get cervical myleogram. No experience with this. Does it hurt?

2. Get EMG/NCT. I am vehemently opposed to this on right arm b/c my last one 10 years ago was so intensely painful I swore them off for life. Nice doc tried to apply logic to discussion, but my inner 5-year old was shouting, NO NO NO NO with her fingers in her ears. Can I be given large amounts of valium and still have a useful EMG?

3. Go to a center, like Mayo, and throw myself at their mercy. Aside from stripping me of every last dollar I may ever earn in the future, does anyone have anything positive to say about doing this?

Lastly, kind sufferers, can you address nice doc's central point that PN doesn't act this way?

[northerngal]

I did the week long Mayo trip for second opinion/diagnosing purposes. If you are looking to get it done in a short period of time, it is good. A LOT of tests, some repetative--they repeated ones I had already had. Just note, they may want to do the EMG/NCV that you are hesitant about too.
I stayed at a place called The value place, that charged by the week. A lot less expensive than the hotels right next to Mayo The room had a small fully equipped kitchen. There was a free shuttle that ran between there and the hospital numerous times per day.
The mayo accepts several insurances, all of my medical tests there were covered 100% by anthem Blue Cross ( I had already met my deductable---the IVIG took care of that in one infusion).
Not sure what info you are looking for regarding mayo, feel free to ask if you have specifics questions

[DavidHC]

Can I ask which Mayo location you went to? Is there a better one? Is it the one in MN? Thanks.

Originally Posted by northerngal

I did the week long Mayo trip for second opinion/diagnosing purposes. If you are looking to get it done in a short period of time, it is good. A LOT of tests, some repetative--they repeated ones I had already had. Just note, they may want to do the EMG/NCV that you are hesitant about too.
I stayed at a place called The value place, that charged by the week. A lot less expensive than the hotels right next to Mayo The room had a small fully equipped kitchen. There was a free shuttle that ran between there and the hospital numerous times per day.
The mayo accepts several insurances, all of my medical tests there were covered 100% by anthem Blue Cross ( I had already met my deductable---the IVIG took care of that in one infusion).
Not sure what info you are looking for regarding mayo, feel free to ask if you have specifics questions

[bluesfan]

Hi Shaggychic

Sorry to read you're having to join the PN forum as well as the RSD/CRPS one - although it doesn't seem uncommon for them to overlap.

Re your question about the doc's point about 'PN doesn't act that way' - basically BS ... unless he knew specifically which type of neuropathy you have and what is causing it he would be unable to make that conclusion. There are more than 100 different types of neuropathy and just as many causes.

I have SFPN as a secondary condition to an autoimmune disease and mine has come on slowly over many years. Equally I have read many cases of SFPN coming on acutely due to post viral infection, drug toxicity, chemotherapy, surgery etc. Neuropathy that develops quickly is known as 'acute' those that develop more slowly are known as 'chronic'.

I'm posting a new thread with a link to an article about inflammatory neuropathies that I just found - it's interesting reading (although quite technical):

http://jnnp.bmj.com/content/74/suppl_2/ii9.full

There may be something in there that relates to your condition.

When you see your neurodoc at the end of March maybe ask him to write a report explaining to your GP (after all your GP is your primary health carer).

All the best with managing the pain in the meantime.

[glenntaj]

--of neuropathy is ridiculous; a number of autoimmune, toxic, and compressive neuropathies can come on quite fast. And, of course, RSD/CRPS can also come on quite rapidly.

That doctor is likely thinking of the more chronic neuropathies associated with metabolic origins like diabetes or thyroid. While these may be more common presentations, they are certainly not the only ones.

While you have access to Mayo in the Midwest, you may want to look into a visit to the Jack Miller Center in Chicago; it is a dedicated neuropathy center.

And, you should check your testing, to this point, against a few of these lists:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

[ShaggyChic_1201]

Originally Posted by bluesfan

Hi Shaggychic

Sorry to read you're having to join the PN forum as well as the RSD/CRPS one - although it doesn't seem uncommon for them to overlap.

Re your question about the doc's point about 'PN doesn't act that way' - basically BS ... unless he knew specifically which type of neuropathy you have and what is causing it he would be unable to make that conclusion. There are more than 100 different types of neuropathy and just as many causes.

I have SFPN as a secondary condition to an autoimmune disease and mine has come on slowly over many years. Equally I have read many cases of SFPN coming on acutely due to post viral infection, drug toxicity, chemotherapy, surgery etc. Neuropathy that develops quickly is known as 'acute' those that develop more slowly are known as 'chronic'.

I'm posting a new thread with a link to an article about inflammatory neuropathies that I just found - it's interesting reading (although quite technical):

http://jnnp.bmj.com/content/74/suppl_2/ii9.full

There may be something in there that relates to your condition.

When you see your neurodoc at the end of March maybe ask him to write a report explaining to your GP (after all your GP is your primary health carer).

All the best with managing the pain in the meantime.

Thanks so much Bluesfan! I see what you mean about acute/chronic. I'm sure nice doc (GP) was indeed referring to the most common type of PN, which is chronic. I do have hypothyroid and have been well managed (as far as I know) on synthroid. No chemo, virus, drug toxicity in my past, tho I did have surgery - the stimulator was placed Feb 2015. I suppose it may come down to deciding whether to leave the stim in or have it removed. I hope not tho.

Thanks for the link! I will look after work.

[ShaggyChic_1201]

Originally Posted by glenntaj

--of neuropathy is ridiculous; a number of autoimmune, toxic, and compressive neuropathies can come on quite fast. And, of course, RSD/CRPS can also come on quite rapidly

That doctor is likely thinking of the more chronic neuropathies associated with metabolic origins like diabetes or thyroid. While these may be more common presentations, they are certainly not the only ones.

While you have access to Mayo in the Midwest, you may want to look into a visit to the Jack Miller Center in Chicago; it is a dedicated neuropathy center.

And, you should check your testing, to this point, against a few of these lists:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

A dedicated neuropathy center?! Holy Specialization Centers Batman! Thanks

Love that you sent links. The more I learn, the better off I'll be!

to all who responded.

[northerngal]

Originally Posted by DavidHC

Can I ask which Mayo location you went to? Is there a better one? Is it the one in MN? Thanks.

I went to the Mayo in Rochester MN. my neuro. was Dr. James Dyck. He and his father Peter Dyck were both there at that time (June 2013) and are both known to be very reputable neurologists.
I'm not sure about any of the other Mayo clinics, my Dr. sent me to this one for a second opinion because of the two Dr's above.

[MikeK]

Originally Posted by ShaggyChic_1201

1. Get cervical myleogram. No experience with this. Does it hurt?

2. Get EMG/NCT. I am vehemently opposed to this on right arm b/c my last one 10 years ago was so intensely painful I swore them off for life. Nice doc tried to apply logic to discussion, but my inner 5-year old was shouting, NO NO NO NO with her fingers in her ears. Can I be given large amounts of valium and still have a useful EMG?

3. Go to a center, like Mayo, and throw myself at their mercy. Aside from stripping me of every last dollar I may ever earn in the future, does anyone have anything positive to say about doing this?

Lastly, kind sufferers, can you address nice doc's central point that PN doesn't act this way?

My responses - I have PN from a critical illness, when the pain in my back intensified it made the pain in my feet & legs even worse. The pain I had versus what the MRI showed were two different things. When I found I wasn't a candidate for a spinal cord stimulator I went to a neurosurgeon and have my answers for your first 2 questions.

1. Mylogram - they inject fluid into your spine they take x-rays and a CT scan then you lay still for 2-3 hours. It hurt no more than any other injections in your back. I had numerous epidurals prior to this so it wasn't a new feeling. This test was the test that provided my neurosurgeon the answers to my back pain, in much greater detail than an MRI. It confirmed DDD an led to spinal fusion.

2. I've had 4 EMG's in my opinion there is too much human interpretation, in my case it showed pain from PN but not from any particular area of my back. The dr's like this test, I think it might have value if done by the same person the next time it is done, that way they can compare it to your results and not the test group.

3. I have no reference, I went to the largest teaching hospital system in my area for my neurosurgeon. My pain Dr is actually from a a different hospital system.

While I still have PN and take Gralise (time release gabapentin) my back pain is pretty much gone.

Hope this is some help for you.

[northerngal]

Originally Posted by MikeK

My responses - I have PN from a critical illness, when the pain in my back intensified it made the pain in my feet & legs even worse. The pain I had versus what the MRI showed were two different things. When I found I wasn't a candidate for a spinal cord stimulator I went to a neurosurgeon and have my answers for your first 2 questions.

1. Mylogram - they inject fluid into your spine they take x-rays and a CT scan then you lay still for 2-3 hours. It hurt no more than any other injections in your back. I had numerous epidurals prior to this so it wasn't a new feeling. This test was the test that provided my neurosurgeon the answers to my back pain, in much greater detail than an MRI. It confirmed DDD an led to spinal fusion.

2. I've had 4 EMG's in my opinion there is too much human interpretation, in my case it showed pain from PN but not from any particular area of my back. The dr's like this test, I think it might have value if done by the same person the next time it is done, that way they can compare it to your results and not the test group.

3. I have no reference, I went to the largest teaching hospital system in my area for my neurosurgeon. My pain Dr is actually from a a different hospital system.

While I still have PN and take Gralise (time release gabapentin) my back pain is pretty much gone.

Hope this is some help for you.

I feel that way about the emg/ncv too. It is not a very objective test. It can be affected by the body temperature, the person doing the test, how the test information is recorded, where all of the electrodes and needles are places, and lastly how the Dr. interprets all, of the above info and summarizes it. I wish there was a simple lab test to measure PN like there is for most other diseases.