1. < Neuropathy

Next course of action for undiagnosed polyneuropathy

Posted by dthomasc @dthomasc, Dec 19, 2023

I have spent the last ten months working with medical teams to determine the cause of my sudden neuropathy symptoms. As a healthy, active man in my early forties, the very sudden (within a couple of weeks) onset of sensory symptoms in my hands and feet was very scary. It took me about four months to get into the care of my primary neurologist. Since that time, I have been through large batteries of tests, from multiple MRIs, blood, urine, cerebral spinal fluid, and skin/tissue tests. Besides high amounts of protein in my spinal fluid (which is non-specific), all of the tests have been negative. It has been comforting to know that these tests have ruled out some very alarming and life-threatening conditions, but frustrating because I continue to live with the symptoms that I do (though better controlled with medication) without being able to address a cause. But what now? My primary neurologist recently referred me to another at OHSU (Portland, Oregon) who I have seen. He reevaluated me, reviewed all my lab work, and basically shrugged his shoulders and let me know that the cause of many of these polyneuropathies is often unknown. He had no additional tests to recommend for me, and told me I didn't need to make a follow-up appointment unless my symptoms worsened. My primary neurologist just concluded my last test without a positive result. He has referred me to yet another neurologist up at the University of Washington (Seattle), and I have been warned I might be waiting several months to get in. I find myself wondering if I am being stupid by continuing to pursue root cause, or whether I should only be focused on managing my symptoms. I haven't been able to find any correlation between lifestyle, diet, and my symptoms, and these meds make me so foggy. I don't really know what else to do.

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pamelaz | @pamelaz | Dec 22, 2023
In reply to @njed "@dthomasc As you can see by those who have previously posted information, having peripheral neuropathy is..." + (show)
@njed

@dthomasc As you can see by those who have previously posted information, having peripheral neuropathy is very frustrating and we'd all like to find out the cause. I have axonal sensory motor both small and large fiber as diagnosed by Mayo in Rochester, now about 8 years since first getting a diagnosis by a local neurologist. I figured if Mayo can't give me the cause of my PN, then I have to stop searching and focus on, as Chris Trout says, quality of life and she is absolutely right. And that is what I've done for the past 4 years. I've discovered that with PN, being active as possible is important and try to implement a reasonable exercise program. Wish you the best and always remember, you are not alone. Ed

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What do you do when a neurologist says you don’t have neuropathy and this after testing was done. I have tingling from my toes up to my hips and some in my arms. No one believes me and says it’s anxiety.

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1 reply
schwartz | @schwartz | Dec 23, 2023

Try a gluten free diet. It worded for me very quickly. I still have numbness and pins and needles but not the pain and burning in my legs that woke me up at night. I do not have celiac disease (I have been tested for it) nor do I have diabetes. To say that I was shocked beyond words, that this was the cause of all the pain and suffering I have felt, is putting it mildly. A word of caution, gluten seems to be in everything and you have to read all ingredients and check out every thing you eat. If you are in doubt, don’t eat it. I just posted my story under “Has anybody used the Noore foot massager yet?”, which in hindsight was probably not the best area to post it. This one change in my life, has lifted me out of the hopeless depression I was sinking into, and I am facing the new year happy, grateful and optimistic. I will continue to try to find a way to repair the damage that this has done to my nerves of the years.

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bettyg81pain | @bettyg81pain | Dec 23, 2023
In reply to @jakedduck1 "@dthomasc I wonder if you could have taken meds years ago that may have caused it...." + (show)
@jakedduck1

@dthomasc
I wonder if you could have taken meds years ago that may have caused it. But I suppose medications have been ruled out.
Mine is believed to be caused from seizure medication, maybe so, but I must take those meds. I took them for 20 years before the neuropathy symptoms started. But the neuropathy and it's complications are better than daily or near daily seizures and being put in long induced comas.
I've had neuropathy for 35 years, what type and what caused it aren't important to me now.
But it sounds like you haven't had it very long so I'd check it out until I was convinced no one knows why. I'd go to Seattle or the Mayo Clinic. There is also a specialist at Stanford University who is an expert in neuropathy. I can't remember his name but I believe he's a pain specialist.
Best of luck to you,
Jake

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I think we all would like to know if the specialist at Stanford has any recommendations! My pain specialist has said he knows of nothing else to do for me except Tramadol and Pregabalin-he's tried an epidural-spinal cord stimulator-nothing has helped!! We all want anything to help!!

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dthomasc | @dthomasc | Dec 28, 2023

I have had to work pretty hard to make my referral to UW go through. After getting a denial letter on the 26th (Merry Christmas to me, right?), I called the UW scheduler and got some more information on how my primary neurologist needed to phrase my referral for care. I then got that information back over to the primary in order to get the referral phrased in a way that the recipient institution would understand my referral wasn't for a general intake, but for an escalation of care. We'll see how well my efforts pay off when I try to schedule next week.

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betty1949 | @betty1949 | Dec 29, 2023

I think that you should continue to explore and get second opinions. I never got a definitive answer to my neuropathy but I hit all the doctors I could. This disease is one that lacks lots of expertise. The docs are still figuring it out. Did you have a COVID shot? I'm no antivaxxer, but when an OHSU doctor mentioned that there were finding correlations I took note. I am in my early 70's and there is a history of diabetes in my family so we went with that although my A1C was low. I was also told mine would get worse and it has despite the best of efforts to contain it. Still, you never know what the medical field can find. Make sure there are no back issues, etc. You are pretty young still. I hope that you can find a cause or at least find ways to have a productive and happy life. I am actually doing well despite symptoms. Fingers crossed for you.

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betty1949 | @betty1949 | Dec 29, 2023
In reply to @bettyg81pain "I think we all would like to know if the specialist at Stanford has any recommendations!..." + (show)
@bettyg81pain

I think we all would like to know if the specialist at Stanford has any recommendations! My pain specialist has said he knows of nothing else to do for me except Tramadol and Pregabalin-he's tried an epidural-spinal cord stimulator-nothing has helped!! We all want anything to help!!

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I'm on Pregabalin and it has helped. Try it if you have not.

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1 reply
dthomasc | @dthomasc | Jan 2 5:22pm
In reply to @pamelaz "What do you do when a neurologist says you don’t have neuropathy and this after testing..." + (show)
@pamelaz

What do you do when a neurologist says you don’t have neuropathy and this after testing was done. I have tingling from my toes up to my hips and some in my arms. No one believes me and says it’s anxiety.

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"Invisible" injuries must be maddening for doctors to diagnose. If I were in your position, I would ask the neurologist why it isn't neuropathy. If it isn't neuropathy, what is his/her reasoning to come to that conclusion? I have been fortunate that none of my neurologists have questioned that my symptoms are very real to me. The fact that my tests have not revealed a cause for my symptoms is not evidence that my symptoms do not exist. It just means that they cannot name a cause. Both of my neurologists have braced me for the reality that they may not be able to discover a cause, but neither have invalidated my symptoms. If at all possible, please try to get into the care of another neurologist who takes your condition seriously.

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1 reply
dthomasc | @dthomasc | Jan 2 5:25pm
In reply to @betty1949 "I'm on Pregabalin and it has helped. Try it if you have not." + (show)
@betty1949

I'm on Pregabalin and it has helped. Try it if you have not.

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My "secondary" neurologist suggested that I work on tweaking my prescription cocktail and Pregabalin was one of four options. I have been looking up each of them individually to see what I may want to try first. Thank you for sharing that you have had good luck with this one.

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pamelaz | @pamelaz | Jan 2 5:47pm
In reply to @dthomasc ""Invisible" injuries must be maddening for doctors to diagnose. If I were in your position, I..." + (show)
@dthomasc

"Invisible" injuries must be maddening for doctors to diagnose. If I were in your position, I would ask the neurologist why it isn't neuropathy. If it isn't neuropathy, what is his/her reasoning to come to that conclusion? I have been fortunate that none of my neurologists have questioned that my symptoms are very real to me. The fact that my tests have not revealed a cause for my symptoms is not evidence that my symptoms do not exist. It just means that they cannot name a cause. Both of my neurologists have braced me for the reality that they may not be able to discover a cause, but neither have invalidated my symptoms. If at all possible, please try to get into the care of another neurologist who takes your condition seriously.

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Are you in the Dallas, Tx area? My neuropathy is so bad I can’t sleep.

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dthomasc | @dthomasc | Jan 5 6:39pm
In reply to @pamelaz "Are you in the Dallas, Tx area? My neuropathy is so bad I can’t sleep." + (show)
@pamelaz

Are you in the Dallas, Tx area? My neuropathy is so bad I can’t sleep.

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I'm sorry, no. Another member did share a link to a resource to find a doctor. I took at a look at Dallas, and there appear to be a couple of doctors listed. Perhaps you could get into the care of one of them. https://www.foundationforpn.org/support/find-a-doctor/

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