@lynn6578 Hi and I wish you the best in your journey. And that's exactly what it is. I was first diagnosed in 2015 and went home, googled PN to find out more about it. And it is an ongoing learning process. I've learned a lot from others here on the Connect and our mentors are great in offering information based on their personal experiences along with links to websites that help us understand PN and how to best cope with it. Ed
At my second-to-last neuropathy appointment, I was invited to take a simple cotton-swab genetic test. That's because I had mentioned in passing that my brother (now deceased) had had some form of neuropathy. However, the results of my cotton-swab test came back negative, negative, too insignificant to tell, inconclusive, negative, negative. It's a rabbit hole, all right.
Ray - You got quick (or perhaps normal) DNA results back. I was told to expect my results back in 4-6 weeks. I am now at week 9 and getting antsy, wondering if it means 1) they found something and doing deeper dives 2) they didn’t find anything but doing deeper dives, or 3) they’re just backlogged. I remember the initial long list of blood labs they took at the beginning of all this, as I’m sure you do. My doctor back then said with each result “Trust me, it’s a good thing that came back negative!” Well, OK then, I’ll try to be positive about that. But I don’t think we’re completely weird for wishing we had a little hint of what it might be 🤔
@justbob Bob, on the TENS unit, like Ray, mine is sitting in a box...somewhere. I was first diagnosed with PN in 2015 and while in PT around 2018, my physical therapist felt a TENS unit might help. He requested that my primary doc write a prescription for it so my insurance would cover the cost. I followed the instructions and after 10 days, it went into the box. No help. That's me, however, I suggest that each of us must explore any help possible because we all have different causes for our PN and who knows what might help. Ed
Yep, from what research I have done, the science just isn't there with respect to Tens units. Cochrane, my source of quality studies, gives it pretty much a thumbs down.
I started out having a discussion with my primary doctor who did refer me to a neurologist for some initial testing. A referral will sometimes get you in the door to see a neurologist a little quicker than making an appointment on your own. So, in my opinion, if your primary doctor is not doing any initial testing, then you will likely get a referral to see a neurologist who hopefully, specializes in PN. In my case, due to the initial symptoms, an EMG was ordered which confirmed PN. I am not a diabetic and I am 9 years into this with no cause.
Hello @doetexas, I would like to add my welcome to Connect along with @njed and others. I think the first step to finding out if you have neuropathy may be to learn about the different symptoms that are related to neuropathy and then discuss them with your primary care doctor, or try and see a neurologist. Here is some information from Mayo Clinic about the different symptoms for peripheral neuropathy - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061.
Ray - You got quick (or perhaps normal) DNA results back. I was told to expect my results back in 4-6 weeks. I am now at week 9 and getting antsy, wondering if it means 1) they found something and doing deeper dives 2) they didn’t find anything but doing deeper dives, or 3) they’re just backlogged. I remember the initial long list of blood labs they took at the beginning of all this, as I’m sure you do. My doctor back then said with each result “Trust me, it’s a good thing that came back negative!” Well, OK then, I’ll try to be positive about that. But I don’t think we’re completely weird for wishing we had a little hint of what it might be 🤔
Deb - Sounds like your testing is more in depth. I had one test done, CMT. Was told it would take about 2 - 3 weeks for the results to come back. I took 5 weeks. Nobody seems to be in a hurry, except us. No news is.....how's it go?
Hi Ray, I was just diagnosed 2 months ago with peripheral polyneuropathy... And am heading down the rabbit hole of tests. May I ask what tests you endured before they gave up apparently and considered it idiopathic?
Thanks
I can tell you that my neurologist had me xrayed,then blood test,then gathered up info from my other dr's and finally the shock and needle test and its still going on with a new drug that i am not taking.
Ray - You got quick (or perhaps normal) DNA results back. I was told to expect my results back in 4-6 weeks. I am now at week 9 and getting antsy, wondering if it means 1) they found something and doing deeper dives 2) they didn’t find anything but doing deeper dives, or 3) they’re just backlogged. I remember the initial long list of blood labs they took at the beginning of all this, as I’m sure you do. My doctor back then said with each result “Trust me, it’s a good thing that came back negative!” Well, OK then, I’ll try to be positive about that. But I don’t think we’re completely weird for wishing we had a little hint of what it might be 🤔
Hi, Debbie. I should have been clearer. My neurologist's office had to wait 4-6 weeks before receiving my DNA results, and another week or so before I could get in to talk with the doc. All the while, I was wondering, Am I a Neanderthal or not? After all that wondering, apparently, I'm not. –Ray
Maybe one clue is that it’s not bilateral. My neuropathy pain is always bilateral, maybe one side worse than the other, but always both sides. So I vote ortho. Go get a good steroid injection!
Hi, julbpat. That's my thinking, too: something not bilateral betters the odds that it's ortho. Over the years, I've gotten good results from deep-tissue gel injections, so that's what I'm hoping my doc suggests this time. –Ray
If you drink alchohol....STOP!! and read up on the drugs they give you.They are not God!! I have refused 3 this year alone.When i call prescibing Dr and tell them the script made it worse,they just say"ok,quit taking them".
This may not be politically or medically correct to say, but a little bit of drink is the ONLY thing that has ever taken the edge off my neuropathic pain so far. Just saying.
@lynn6578 Hi and I wish you the best in your journey. And that's exactly what it is. I was first diagnosed in 2015 and went home, googled PN to find out more about it. And it is an ongoing learning process. I've learned a lot from others here on the Connect and our mentors are great in offering information based on their personal experiences along with links to websites that help us understand PN and how to best cope with it. Ed
Ray - You got quick (or perhaps normal) DNA results back. I was told to expect my results back in 4-6 weeks. I am now at week 9 and getting antsy, wondering if it means 1) they found something and doing deeper dives 2) they didn’t find anything but doing deeper dives, or 3) they’re just backlogged. I remember the initial long list of blood labs they took at the beginning of all this, as I’m sure you do. My doctor back then said with each result “Trust me, it’s a good thing that came back negative!” Well, OK then, I’ll try to be positive about that. But I don’t think we’re completely weird for wishing we had a little hint of what it might be 🤔
Yep, from what research I have done, the science just isn't there with respect to Tens units. Cochrane, my source of quality studies, gives it pretty much a thumbs down.
I started out having a discussion with my primary doctor who did refer me to a neurologist for some initial testing. A referral will sometimes get you in the door to see a neurologist a little quicker than making an appointment on your own. So, in my opinion, if your primary doctor is not doing any initial testing, then you will likely get a referral to see a neurologist who hopefully, specializes in PN. In my case, due to the initial symptoms, an EMG was ordered which confirmed PN. I am not a diabetic and I am 9 years into this with no cause.
Hello @doetexas, I would like to add my welcome to Connect along with @njed and others. I think the first step to finding out if you have neuropathy may be to learn about the different symptoms that are related to neuropathy and then discuss them with your primary care doctor, or try and see a neurologist. Here is some information from Mayo Clinic about the different symptoms for peripheral neuropathy - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061.
Here is some information about the different neurological examinations and tests that might be helpful - https://www.foundationforpn.org/understanding-peripheral-neuropathy/evaluation-and-tests/.
Do you mind sharing what symptoms you have that make you suspect neuropathy?
Deb - Sounds like your testing is more in depth. I had one test done, CMT. Was told it would take about 2 - 3 weeks for the results to come back. I took 5 weeks. Nobody seems to be in a hurry, except us. No news is.....how's it go?
I can tell you that my neurologist had me xrayed,then blood test,then gathered up info from my other dr's and finally the shock and needle test and its still going on with a new drug that i am not taking.
Hi, Debbie. I should have been clearer. My neurologist's office had to wait 4-6 weeks before receiving my DNA results, and another week or so before I could get in to talk with the doc. All the while, I was wondering, Am I a Neanderthal or not? After all that wondering, apparently, I'm not. –Ray
Hi, julbpat. That's my thinking, too: something not bilateral betters the odds that it's ortho. Over the years, I've gotten good results from deep-tissue gel injections, so that's what I'm hoping my doc suggests this time. –Ray
This may not be politically or medically correct to say, but a little bit of drink is the ONLY thing that has ever taken the edge off my neuropathic pain so far. Just saying.