Connect
← Return to Cervical myelopathy mistaken for neuropathy
Discussion
Cervical myelopathy mistaken for neuropathy
Neuropathy | Last Active: Apr 30, 2023 | Replies (21)Comment receiving replies
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
Replies to "Good evening dbeshears1, I just read your reply post and I will have to admit that..."
Hello, I have read your information and would like to ask some questions. I come from Norway, and we are not clever at helping people with severe traumas. I see that you and I have experienced some of the same issues. Therefore, I would like to know what kind of surgeries you got and what kind of therapy. I have subluxation on C1 and all the way down, so my sight has been threatened for a long time. I am now offered a fusion by a specialist in Germany, as my life has been so bad over years. There are several issues after several accidents, as a result of incompetence in our country. Did you get help by Mayo-clinic or elsewhere? Thank you for your contribution and hoping you are well. Kind regards, Kari
Connect
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!