PN progression? How can you be sure?

@ray666 - I'm not sure what tests you've had since last year but in our age group and it includes me, you can't rule out any of the items you've discussed in your post. Any meds or supplements that can reduce the effects could be a possible indication. My neuro doc says that my numbness is causing my walking difficulties. In particular, balance control. I'm told by my physical therapist that we rely on sight, hearing and feeling for control of balance and losing one or two can impact balance, especially feeling in the feet. Stand in a room at night, turn out the lights, with foot numbness, you just lost two of the requirements for balance. Not suggesting you try this!! I suspect your neuro doc can answer many of your questions. Good luck with the appointment.

Hi. I just read your Post. Right away, it was ME TOO! I have arthritis and SFPN, and often I am not sure what causes my pain, Unfortunately, I do NOT have a Neurologist in my town that knows how to help (anyone) with PN. One of my other Doctors was honest about that! I was told I needed to go to a larger city in my state (PA) to get a doctor that really can help. Meanwhile, through my Hand Doctor, I was referred to a Doctor for Medical Marijuana. BINGO!! (LOTS OF TRIAL AND ERROR) but, now, I take a little CBD capsule every morning and it cuts the pain in half. BTW, no "high" feeling, I am way past thinking that is fun. Now I have a new headache for the past 7 weeks. I have had an CT scan, and an MRI and no clue as to the cause. So, my new question is,... can a person have Neuropathy in the head? Is that possible? Anyone else?
I do have severe pain in my feet. Every year, it gets worse, but I can still walk at a good pace. I rub my feet every morning and night with THC ointment. I skipped one night and had to get OUT of bed and put it on.
The weird thing is the extreme PN differences. I finally think of it this way...
If you say someone has, "PERSONALITY"...
Ah, WHAT DO YOU KNOW ABOUT THEM?? NOTHING!!!
PN's THE SAME!!! Lots of differences!!
Best wishes

Ray, that is exactly my question. My pain doc is trying to get me into a neurologist and hopefully he/she will have some insight. At my last appointment (this week) I mentioned that I wondered if it was possible that I was developing M.S., and after fielding my intake (it is 3 pages every appointment) he and his P.A. also threw out the possibility of Parkinson's. My symptoms are different from yours, but other issues are always "out there", it seems. I think our docs generally do the best they can, given the complexity of the human body and the millions of combinations of symptoms that they are presented with. But it sure is frustrating anyway, not knowing.
Hope you have a restful and safe weekend with the coming heat! If I remember correctly, you are thinking about combining your household with that of your longtime partner. My thought is, one's health and ability to make physical changes is usually better now than later. Best of wishes and blessings to both of you!
Barb

I think you have to deal with it one symptom at a time. I’m inclined to believe (at age 58) that everything I have is because of my PN. It seems to be where most of my doctors have put everything if it’s not obviously something else. But if I need help with managing a particular “symptom” of PN, I seek out the specialist who can help it, as I haven’t found Neurology as the field being in charge of helping improve our quality of life - WE are.
Hammertoes? Maybe it’s caused by my PN per my PCP, no clear indication, but my Neurologist shrugged it off as nothing he can do about it. So I took initiate to line up a Podiatrist because I’m interested in staying on my feet most effectively and efficiently for hopefully a long time. My severe dry eyes was checked off as probably PN related too, but I was the one to have to take it the step further to charge my Ophthalmologist with keeping my vision and eye comfort optimal. Dry Skin - I have my Dermatologist though it’s probably PN. Balance? I went out and lined up PT.
You get it, you already know the drill. PN can easily be the black hole to dump everything in and we figure out how to live with it, which sometimes mean seeking out specialists for that function to help us improve our lives or make us safer. Hopefully if the specialist has the thought it might not be PN, he’ll test or treat accordingly.

Hi, fala (@fala)

I think you picked up on my dilemma: When you have an assortment of aches & pains, aches & pains you've lived with for years, waaaay back before you got diagnosed with PN, how the heck do you sort one kind of pain from another? I have plenty of "old friend" aches & pains. I'm 78. I used to be a long-distance runner. Miles and miles on rough trails and rock-hard concrete did terrible things to my joints. But I loved all those miles of running. I wouldn't trade them in for anything. Then last August I was diagnosed with PN. It was localized in my feet, but I was cautioned it might spread. For the longest time, I ascribed every little twinge in my ankles & knees to a "sure sign my PN is spreading!" It took me a while to realize, No, Ray, those twinges are the same ol' twinges you've been feeling for years. Reminding myself of that did wonders for my spirit. My PN is what it is; whether or not it will spread remains to be seen. But for now, not every ache or pain I feel is a sign that it's spreading.

Cheers!

Ray (@ray666)

Hi, Barb (@bjk3)

I think you're right that most docs are trying to do a good job. I am reasonably sure my neurologist is. That's why I try to show up for my appointments fully prepared with a half dozen well-thought-out questions––like this time, my No. 1 question will have to do with vitamins & supplements: What have my past labs indicated? Am I running any risks now that I'm taking EB-N5 (at his suggestion)? Need I be concerned about overloading on B-6? How about sending me for fresh labs? Should I plan for a second EMG? Those sorts of questions.

My partner and I are still (note: still!) talking about combining households. We need to do it soon, or before you know it, it'll be another one of those "We should have done it sooner" projects. LOL

Cheers!
Ray (@ray666)

Hi Ray! Misery loves company. Thanks for the response. I was sooo active with four children, large house and property with many, many animals including two horses to manage on my own. I had a husband, but he only paid attention to his job.
I love kids, so at different times, I took in four different children. Some for a year, some for two years. Their are Horror stories connected to three out of four. For the children's sake, I had to move out of my lovely home, worked two jobs, and could easily stay up until 2;00AM to get everything done. I should mention, my second Husband died 12 years ago and was wonderful!! Jump forward to now. I have been own my own since. I did OK until NOW!! PN is creeping up my legs, feet always screaming! Sure, arthritis moved in through the years, but manageable. Just 7 weeks ago I have a headache that is not able to be diagnosed, even with many tests. So, I am asking the same question AGAIN.............
Can PN be in your head? Physically, not mentally..
Different people read different posts at different times...I am just hoping to find that answer, (yes, I went to two Neurologists, no answers) This is a nasty disease with lots of faces!! You certainly had your DAY, and that gives some (small) satisfaction to have had a satisfying past. We all trying to help each other now!!
Best wishes, good luck and all that to YOU!
Fala

Hi, Debbie (@dbeshears1)

That's basically the approach I take, although I do take it upon myself to keep all of my specialists apprised of my situation. I make sure two of my docs especially have a good overview: my PCP, and the one neurologist with whom I've been working most closely. He specializes in physiatric medicine, so he likes having an overview. The others all know that I'm dealing with PN. When I went to see my podiatrist a few weeks ago, I told him I'm here to find out if podiatry could help with my PN (my walking). When I see my hematologist next month, I intend to ask him if my PN could be the chief cause of my low red blood cell count. It's as if we as patients are partially responsible for ensuring we benefit from a system of integrated medicine. I actually enjoy doing what I do: the more I talk to my various specialists, the more I learn.

Enjoy your weekend, Debbie!
Ray (@ray666)

"We are all trying to help each other now!!"

That is so true, Fala! For me, the community is the magic of Connect. I found early on, before I got involved here, that PN can be such a deflating disease, almost harder on the spirit than the peripheral nervous system.

Best wishes to you, too!
Ray (@ray666)!

If anyone knows...
Can it affect your head?