Jennifer,
Thank you! You’re volunteerism at this is remarkable and deeply appreciated.
Quick questions before I go too far;
1
I hear these ominous statements about the epidural injections and yet every time I research and read about them it seems very rare that they create complications. I’m not sure what that’s about. It seems like it helped you find your way. Is that right?
2
How did you find out about the spurs? I’ve had Xrays and MRI’s and no one has noted or seemed to have seen spurs. I’m curious if they can be in there without showing up on Xrays or MRIs
3
You talk about switching doctors. I’ve been reading a lot about different practices and curious about contacting others. Do you know anything about looking outside of ones own state? So I found a DR Latov in New York who seems to be exceptional with idiopathic Peripheral Neuropathy but they don’t take my insurance. Would I just buy separate insurance?
4
Was Neuropathy ever a part of your situation?
You’re narrative about spinal issues is very helpful! I do think I’m having lots of complications from spinal issues. I have the diagnosis of IPN, spinal stenosis, slight bulge and arthritis. The thing that to me seems so obvious is that I have arthritis at the lumber regions and the cervical regions where the nerves come out which are exactly the nerves which serve the areas of my body that are having the highest degree of symptoms. The problem is that those symptoms overlap almost perfectly with IPN; numbness starting in the feet and moving to the hands. Sadly I do think I have ‘a neuropathy’ although I’m open to that diagnosis being revisited. However, I am going to look in to more research and with other docs regarding the back issues because of your narrative! Unlike your situation I have lots of numbness and pain that is ‘in line’ with the deterioration that happens with IPN. I have some pain but nothing like what you’ve described. My current thinking is that I probably have similar issues with the spine at different locations as you do but that I also have IPN. My guess is that I could manage the IPN way better if I weren’t struggling with the spine issues so much. Another big piece of the narrative of my back that the docs seem to be ignoring is that of my left leg and foot. I used to play indoor soccer and did this move that started to make my left foot go numb. It happened two or three times over the course of several months before I finally decided to end my 40 year soccer playing. The numbness went away and only resurfaced occasionally. Now however, although I have the IPN diagnosis which is supposed to be very symmetrical I have severe issues with my left foot. I can see that it’s really getting damaged. The toes are curling up ever so slightly because of the muscle and nerve weakness etc… This is another symptom the docs seem to be happy to ignore.

Jennifer, Your story is inspiring. I’m guessing you persevered through some very dark moments.

The following are just thoughts regarding other parts of our dialogue;

Idiopathic
I agree about the idiopathic diagnosis. Boy do we have to watch out for ourselves in the medical field!!
At my first visit to a neurologist and after the conduction study to test nerves in my legs he said I ‘have an idiopathic neuropathy and that it’s a condition that will get worse the speed and degree to which we don’t know and that he could send me to get many expensive tests but that they wouldn’t matter because none of the unknown neuropathies were conditions that could be helped in any way.’ Yikes. I told him ok don’t bother with the tests as that seems foolish to do. Later my regular doctor was reading his notes and asked me why I ‘refused further help!’ What? Astounding! He wrote that ‘patient refuses further assistance or treatments.’ This is something I never said and far closer to what he said. They’re essentially words he put in my head. Prayers to anyone who has been told this stuff and didn’t have the fight left in them to look further. Scary.

Idiopathic PN
I found Doctor Latov who seems pretty compassionate, highly knowledgeable and confident. He’s done some talks on idiopathic neuropathy that are great to listen to. He likes to refer to the term as idiotic pathetic. Basically what he means by that is it seems it’s a way to give up which shouldn’t be a part of this.

I don’t have another surgeon in mind. I guess I’ll begin more research on that now.

Thank you, thank you Jennifer. I’m deeply touched, helped and motivated by your help.
Darren