Neuropathy: My Journey
I have a question. Have any of you with small fiber neuropathy along with severe axonal sensorimotor polyneuropathy have these problems after being diagnosed?
2015 diagnosed with the polyneuropathies
2020 diagnosed with hypothyroidism (can cause neuropathy but
I was diagnosed with neuropathy first) thyroid was fine
Cysts and tumor on thyroid
2023 doing testing for diabetes first time glucose levels elevated
found cysts on pancreas A1C level 5.7 glucose 103
Yes that was fasting.
Has anyone had these problems after being diagnosed with neuropathy?
They do not know the etiology (cause) of mine!
University of Boston research neurology is starting testing on me for genetics
Interested in more discussions like this? Go to the Neuropathy Support Group.
I had a good friend that worked as a recruiter placing doctors . She had an orthopedic group as a client, which was always complaining to her that her placements weren’t “ booking” enough surgeries. Success at this facility centered around exceeding the minimum number of required surgeries.
Orthopedic surgeons were let go if they didn’t book enough surgeries. My friend reported this practice. These people should have lost their license to practice medicine, but no, to this day they are still in business.
I can believe it. My orthopedic surgeon appealed to the Board of Anesthesia for that doctor to loose his license. He has taken care of me since 2010. He has never had problems with me and anesthesia. It scared me so bad what gave that anesthesiologist the right to do that. It happened in October still upsets me. I have an autoimmune disorder and there’s times where I can’t put any weight on my hip. He did my right hip first that’s where they overdosed me and for the left hip it was done at a different facility and no problems in and out of recovery in 30 minutes.
If you get an answer to your question please post. Many people have the same question. Thanks
I'm not sure anyone can really answer the question with specifics due to the complexity and range of symptoms and causes. Some of your questions are discussed in this John Hopkins reference.
"There are more than 100 types of peripheral neuropathy, each with its own set of symptoms and prognosis. Peripheral neuropathy has many different causes."
"Can you have multiple types of neuropathy?
Damage to these nerves can be serious. Combination neuropathies. You may have a mix of 2 or 3 of these other types of neuropathies, such as a sensory-motor neuropathy."
--- Peripheral Neuropathy: https://www.hopkinsmedicine.org/health/conditions-and-diseases/peripheral-neuropathy
Hi @artemis1886, Thanks for the private message. I'm sure you are not alone when comes to feeling you are getting all kinds of neuropathies. When new or different symptoms pop up often that's what I start thinking myself - what's going on now. Your question about a service or support dog is a good one and I'm sure you are not the only one that has thought about getting or needing one. Here are a couple of discussions that are not in the Neuropathy support group but that you still might find interesting if not helpful:
--- Training or Getting a Service Dog: https://connect.mayoclinic.org/discussion/service-dog/
--- The value of an animal: https://connect.mayoclinic.org/discussion/the-value-of-an-animal/
There is CIN-chemo-induced neuropathy. I doctors said it would go away after cancer treatment, but a year and a half out from treatment, I still have neuropathy in my feet, toes, hands and fingers and balance is not good. I have a strong margin for falling and/or bone fractures. I am 83 years old so this is not good. Started Fosamax and had terrible stomach pain, and bone pain in my legs. I stopped this and going to discuss with primary about what to do next. Also, tried anti-cancer drug IV and after third treatment neuropathy got so bad I could not sleep due to both pain and tingling. I stopped treatment and decided not to do Tamoxifen, also because of side affects. Everyone has to decide what is best for them I guess.
Bone builders are tough on you. I tried them all but one hurt less that the others. The insurance would not cover that one. I had avascular necrosis ( the bone does lack of blood flow then the bone collapses) along with osteoporosis. Bottom line my doctor ( orthopedic surgeon) said I had a choice keep breaking bones or take something to strengthen them where they would not break so easily. I had three left hip replacements and an actebulum fracture in one year. I had to buck it up and endure the pain for two years.
I was 36 and now 61.
Has anyone tried nooro pads?
Barb
Hi Barb, @mannyk, @mlovette, and @delia74 have talked about the Nooro device as well as discomfort in their feet from neuropathy and may have more to share.
Although I have NOT used nor commented about the Nooro device, I have indeed been coping with neuro pain in my feet (other areas as well!). I was always told by many doctors that the pain was not due to diabetes, but no one could identify the source either...
Yes, John, I have tried various "self remedies" in my quest for at least some relief, and you are correct that I've responded to members postings about their respective pain and quest for relief. I am still on that journey!
Would be happy to address members' questions. Perhaps they will find a nugget of comfort by trying to implement strategies that I've tried over the years, or at least find reassurance in connecting that they are not alone, not imagining what they feel, and that they need to best advocate for themselves.
As for the Nooro device, I did search for info (a few months ago) and decided against purchasing/incorporating it in my self-care.