Cervical myelopathy mistaken for neuropathy

@yojimbob Kudos for your neurologist for doing the MRI. A neurologist is supposed to diagnose where a nerve problem is coming from. It shouldn't have taken 10 years to find this out. I had a conversation with you about Drop Foot and told you I had that from cervical spinal cord compression back in September. You may want to go back and respond to your post now that you know the real cause of your symptoms.

Here was the link to your post:
https://connect.mayoclinic.org/comment/753339/
I also had trouble getting a correct diagnosis, and I did get to where I had electric shocks down my body if I bent my neck. Spine surgery to decompress my spinal cord resolved all of that.

Your post brings up a very good point to ask questions and keep asking questions. A doctor needs to pinpoint where the pain is coming from and not just treat it with pain killers. With all that being said now, have you been referred to a spine surgeon? I would suggest getting several opinions. I had a one level fusion at C5/C6 with no hardware. I only had spinal cord compression, and none at the nerve roots. Do you have any questions you would like to ask?

Hello@jenniferhunter
Funny thing , I remember speaking with by brother recently . I was telling him that I remembered reading a post on this very site . It was by a woman talking about foot drop . She said that a procedure on her spine cleared it up .
That was YOU?
That was the post that inspired me to get the MRI .
Well it’s nice to meet you @jenniferhunter

@yojimbob Yes, that was me, and thank you so much for your kind words. That means a lot to me to know how I helped you seek the correct diagnosis. Wow! Spine problems are just tricky because you can feel pain in a nerve and it could be generated anywhere along the path of the nerve. I knew my foot drop was caused by my spinal cord compression because it happened when my vertebrae were slipping a bit which effectively made the spinal canal smaller which put more pressure on my spinal cord, and when my physical therapist realigned my vertebrae again, the foot drop stopped until muscles spasms moved everything around again.

I also had foot drop right after the accident that caused the whiplash for about a month before it got better. That must have been some bruising to the spinal cord, but no one knew it at the time. When there is a compromised nerve, it is accompanied by weakness, and no amount of will power will overcome it. It was difficult to get a correct diagnosis. I actually found medical literature with cases like mine, and with that in hand, I contacted Mayo Clinic, and then had spine surgery with a great surgeon there.

It's nice to meet you too! You made my day! I am excited for you now that you know what is wrong. Choose carefully and find the best spine surgeon that you can. I hope you will come back and share what offers of help you get from surgeons, and you can ask me questions. It can be overwhelming, and I learned so much about spine surgery when I was still looking for a surgeon to help me. It will be a journey, but now you know where you're going.

I am so happy for you, not that you have this thing, but that your perseverance paid off to where you got a diagnosis and have new hope or choices that may help you! It’s the type of Cinderella story I’ve been hoping for after 6 years, my wish to make the word “Idiopathic “ go away so as to have a clearer roadmap on how to live optimally with this thing.
I have been coming to terms with living without a diagnosis, now your story has me wondering. My first Neurologist, at my mysterious PN onset, wanted to order an MRI but couldn’t because of metal wires in my heart. 18 months ago when my time came for the heart device replacement, I had them replace my 18 year old metal wires with newer MRI friendly ones for the sole benefit of having MRI’s available to me as a diagnostic option whenever needed for health. But I had moved to a different state, and my new Neurologist said MRI wasn’t necessary. I had endured 3 years of incompatibility with him, so I switched to a recommended practice partner of his who also doesn’t believe that an MRI would add value. I’ve almost begged for an MRI, and realize in the back of my head, as much as I like the new Neurologist that I’ve seen only once now, he’s unlikely to “start from scratch” versus just building on his partner’s previous work and decisions. So I’ve almost given up hope that I’ll ever get an MRI to complete or put closure on the diagnostic journey I’d hoped for. (I may be moving to a different state in 2 months, if so, maybe a new Neurologist that I’d be forced to find may have different thoughts) in the meantime I’m trying to be positive about making the best of being idiopathic and learning good things from this group on managing and beating the symptoms!
Didn’t mean to detract from your happiness with my relapse into self-pity. I am ecstatic for you, and the new hope available for you! More than anything, I’m thankful for you sharing your journey and knowledge with all of us on here. I can’t wait to hear how you proceed and succeed with this new knowledge - please keep us posted! Deb

Getting second opinions from doctors in the same area can be dicey, they have a tendency to back each other up.

Sometimes I wish I could start medical treatment all over again under a new identity (for my Idiopathic PN). It would be nice to have a completely fresh start with a fresh perspective, with no chance of bias or reliance on assumptions of previous providers. Doctors are so rushed anymore, it might be easier to just do their own things versus reading through many years of previous, multiple provider notes. I have caught things they have missed or read improperly from past notes, or were just unfortunate mistakes in the dictations in some reports. Heck, I've caught errors and omissions my current doctors have made from visit to visit with them. I know insurance companies don't want to and won't pay for unnecessary duplication, but sometimes I'd like to tell a doctor "Don't tell me what past doctors think, I'd like to hear your own analysis". I have a GI medicine I've been asking to consider stopping, from a now deceased doctor from a state I lived in 15 years ago. Nobody today can confirm exactly why I'm on it and if I need it, and I'm embarrassed to say I have no clue either. But my doctors don't want to change anything because they don't know and there's no need to chance an issue by stopping the medicine! Hence, my wish sometimes to start over with a new medical identity....

When I changed primary physicians a few years ago I was looking forward to discussing and perhaps eliminating some of them. My heart sank when he said they were all necessary. He didn’t want to offend someone he probably knows. I am pretty upset with a Dr. at a pain clinic who tentatively diagnosed me with CAUDA EQUINA . The spine clinic nurse said CE was never mentioned at my Pain Clinic appointment. Fortunately the pain clinic doc spelled out on the back of one of her cards. Are they both lying? There is a cover up going on here. What is the spine clinic so afraid of?
I don’t know if I have enough info to formally protest. Enough said for the time. Don

Good evening dbeshears1, I just read your reply post and I will have to admit that I was a bit concerned. In trying to interpret your contribution Debbie, I gather that you feel there just has to be a reason for your neuropathy other than Idiopathic. I just don't know what that might be. It can't be easy like diabetes or chemo. It is not understandable like Trauma from injuries or surgeries or heaven forbid some combination of the two.

That's what led to my SFN (small fiber neuropathy). And so I spend way too much time exploring my past accidents and the surgeries that put me back together again. Was it because of the 3 days I spent face down in a sling over the hospital bed in Dover trying to reduce the size of the concussion on the back of my head? Was it that first rear-end collision on the off-ramp in Pittsburg? I lost my son that day also. And there are several other accidents beginning at the age of 13 including that pretty horrendous fall down the mountain.

Our bodies are amazing and the result of complex materials used to create a body that may function for 100 years. Wear and tear are way too possible. I know you have read that 100% of human beings who experience aging are likely to encounter neuropathy of some kind before they die.

As other aging medical issues pop up more frequently these days, I am more likely to lump them all together. I just spent six days with my 3 and 5-year-old grandchildren. I see them twice a year. So we do puzzles, play iPad games and I read them our favorite pop-up books. This Thanksgiving I found everything just a bit more difficult. 1. Needed my new reading glasses. 2. Had to prop my neuropathic feet up on warm pillows. 3. Could only read a couple of their pop-up books before having to take a break. And, I did without my medical cannabis to avoid any mysterious behavior.

So.....would it be possible for you to tell me the essence of your concern?

May you be free, safe, and protected from inner and outer harm.
Chris

To be honest Chris, my only concern (or hope) is that whatever I have has a reason or cause that, once known, may have a chance at correction, OR, gives me a clearer set of expectations and instructions to follow. One day I was not quite 52 and running half marathons, wake up with weak legs, and within 10 days in the hospital with a UTI and no longer able to walk. They say UTI was coincidental . 6 months confined to wheelchair, but with hard work and 7 weeks of institutionalization with good PT, then home and outpatient PT, I’m able to live with a walker, and am very thankful I graduated to that!
I understand how aging affects thing; I just turned 58 and have senior things happening at age 51 til now, but while I am glad, it would be helpful if I ever had elderly/aging family that ever had anything similar, or if I personally ever knew anyone in a similar boat. I don’t really have old physical trauma in my past except the occasional whiplash or the bodily stress of running, biking, and boating in rough waves, and a cardiac arrest 20 years ago while running (hence a bad fall and 3 days on life support ) caused by an unknown heart conditional they found to be “idiopathic “ cardiomyopathy. (Hence the origin of me hating the word “idiopathic”, and future claims to be made that cardio myopathy and Neur opathy are not related) Thank God and doctors that I’ve never had a heart issue again, but I have the assurance of my ICD since then.
But hey, I’ve been doing well moving forward with acceptance of this unknown, as I’m learning from this group I really am not alone. And I give 100% to doing my part to improve health and not putting all the expectations of optimizing my life on the doctors. It’s just that sometimes I wish I’d get an “Aha!” about whatever the cause of my PN may be. I’m not saying there is, but kind of like the lottery, “You’ve got to play to win”. It’s my fault I’ve moved since my PN onset and have had reasons to change doctors, but I’m saying when I do change them, I guess I wish I’d get a fresh start instead of continuing on the path of “ok, we’ll just see you every 6 months like your last doctor was doing unless you need to see me sooner”.
I wish somebody along the way, including 2 research hospitals I went to (MUSC and Duke) would have taken me as a research project instead of a “check the box” patient. In their defense, like my primary Neurologist, they admitted the constraint of me not being able to get that MRI because of my defibrillator metal I still had in 2016/2017.
So, 6 years later, new state & Neurologists, now that my body has been updated to allow MRIs, unlike previous doctors, my doctors since have poo-poo’d the need for one. They say my non-SFN PN is just plain Idiopathic and there’s nothing an MRI or Skin Biopsy can do to prove or disprove that. It’s tough having doctors so sure of what the cause ISN’T while not having an idea of what the cause IS. They have checked the boxes for the obvious, on the most part.
So while I’ve been moving on, and I feel I have with this group, there’s this little thing in the back of my head that surfaces once in awhile that asks “but what IF an MRI would reveal something that just wasn’t expected?” So this thread just kind of brought that out, a wish to prove to me that an MRI is a worthless test (for my case) and help me understand why my 2016/2017 Neurologists claimed otherwise. Maybe they were just saying it because I couldn’t have one, but I don’t think so - I felt that it was an item on their checklist to complete if they could.
I apologize for the relapse into self-pity - this thread was a happy one started by @yojimbob with the recommendation to get MRIs and the new hope it has given him. I am sincerely over the moon happy for him, I cannot stress that enough! Every case is different, and it looks like he may have a chance for a cure, and I’m rooting for him! Now it’s exercise time, I use several you have shared with others in this forum, you provide us so much motivation and proof we can have a life with this!

Good evening Debbie, what a special response. Thank you for taking the time to share your thoughts with me and other Connect members. It is difficult to know what folks are thinking without a smiling face to see or even a curious and frightened face.

One of the many things we do agree on is that you give 100%. And your thoughts and feedback have value for so many. My last MRI was for my neck when my surgeon was trying to figure out what was causing the pain and numbness in my arms, wrists, and hands. The resulting cervical spine surgery did give me a more protected neck. However, the SFN remained in my arms, especially the right arm which was the one that had a reverse shoulder replacement.

I didn't read "self-pity".....just didn't want you to be hoping for answers that may not happen. Your acceptance of your condition is genuine and I hope it continues.

May you be safe, protected, and free from inner and outer harm.
Chris