Apparatus for Neuropathy

@maryv449

I've had 3 excellent neurologists. The first 2 retired, and I've been seeing #3 for quite a few years. The current one took a little getting used to, because he's quiet and shy. Over time we've adjusted to each other. I've learned that I might need to ask questions and to get him to explain more fully the things he's said. After he had me try the meds on his list with no positive results, and doing all the tests he could do, he arranged for me to go to Portland (Oregon), to the university hospital and clinics for several tests that he couldn't perform.

I've had mostly good doctors and therapists. The pain therapist is probably helpful to most of her clients, but after 3 sessions I'd heard enough, and I ended the process after 6. Mental Health therapists for the most part have been a great help to me. The trouble is, there's a rapid turnover because the pay scale is lower than it should be, so since 2006, I've seen on average, one therapist per year. I stopped seeing the last one because we didn't click. I think that basically we're on two different planets. The one before the last one was the best therapist I've had.

So, whatever field of practice, different people will respond well to different doctors. Don't let the poor ones stop you from finding the right one for you.

Jim

Hi, these are great questions and I am experiencing same as you. My Diabetic PN happened quickly and at the same time I had post herpetic neuralgia pains followed by a second full on shingles outbreak. Although I am sure years of high glucose caused me the problem I am suspect of the timing finding it very coincidental and feel shingles is at least partly responsible for my PN. Anyways, my feet pain and numbness etc have improved very much in the past 2 months, although still with me all the time I would call it 1-2 on the pain scale. My problem is similar to yours as described I am still left with complete weakness in my knees and lower legs to walk around. I believe I have good leg strength but still just a feeling of weakness. It never improves just there all the time. My doctor put me on Gabapentin just yesterday and explained this would help fire the nerves and improve the weakness? Any one have experienced this.

@rwinney Morning, Rachel....I knew you were cute from your first picture, but God in heaven, this new picture is awesome. You are just adorable!!!!! Wouldn't it be nice if we felt as good as we looked? Just had to tell you how cute you are. Refreshing not to talk about illness!!! Talk later, Lori Renee

@ecc79

Sounds like you were hit with several serious things at once.

I don't feel weakness all the time. I guess that the fear of waiting for the other shoe to drop, as the saying goes. Falling down with no warning is disconcerting. I can just stand back up and go on with what I was doing. I don't feel anything unusual when it happens, so it's hard to describe. I don't know if it's treatable because of the randomness. I just hope it doesn't get any worse.

I have a friend from college who was a missionary in Brazil until his legs started giving out on him. He went to many doctors and couldn't get a diagnosis until he went to Mayo in Rochester where he was finally diagnosed with neuropathy. By then he was using a walker, which must have been a sight - he's tall at around 6'6". From my limited knowledge, the muscle weakness is just one of many signs of autonomic neuropathy. I don't know what medications are prescribed for that, but there is a plethora of meds used for peripheral neuropathy. Neither neuropathy is anything to laugh about.

Jim

Helllloooo Lori Renee
You made me laugh out loud! Thank you for that. I am both humbled and appreciative esoecially today. I had my botox (for migraines) appointment with my Neurologist today and absolutely lost it. Pain has been relentless since the holidays and Im losing ability week by week. So, I went with my main question set and couldn't get any of it out because I could not hold back my tears. Enough said. He drew 15 tubes of blood and I will have answers Friday. My decline is frightening and I'm trying to stay as positive as possible but it's hard to stop your mind from wandering. I'm hoping that I'm wrong with my gut feelings of there being more. Maybe this is the path my small fiber poly neuropathy is taking me on. Time will tell. Anyway, thank you for the sweet compliment, it helped my mood. 😊

Now this is how we work smarter and not harder. Kudos to you Jim!

Speaking of apparatus. I could not walk to get blood drawn today at the hospital. They provided me a wheelchair...the time has come and I'm NOT a fan.

Well, some milestones are very hard to take. However, it may not be for long. Were you able to find out anything about the changes in your legs? Did you get some help with medication options? Been thinking about you today. May you be at ease. Chris

@rwinney

I'm still ambulatory, but the pain is requiring more and more treatment. I take my socks off when I sit in the recliner, which is a large part of my day. Until now, socks and comfortable shoes have been ok, but my feet hurt less when they're bare. I can't walk barefoot, though, and for a long time I've had to have socks on anytime I walk in shoes or slippers.

I'll try to make the most of life for as long as I can on foot. All those walking aids are life savers, but most of us will put it off as long as we can. My mother-in-law absolutely didn't want to go out in the public with a walker. She had serious osteoporosis, and after breaking both hips in falls, she finally gave in.

I've had thoughts in the back of my mind about the possibility of someday needing to make ADA changes to our house. As it is, there's no way a wheelchair can navigate. One thing leads to another.

I hope the blood draw results will be helpful.

Jim

Reading what I wrote an hour ago, I see that it was pretty random. Sometimes my brain doesn't process thoughts very clearly. My wife has an ongoing issue with the number of meds I take and any time I can't come up with a word, I hear and see her displeasure. I know that I'm a little slow with my reflexes sometimes, but there's a reason for each of the medications. I'm tapering down on the morphine sulfate contin. The prescription is 15mg tid, and I rarely take the midday one. Now I'm only taking one in the morning. So, maybe my writing will be less disjointed.

Jim