Living with Neuropathy - Welcome to the group

Thanks John. My podiatrist recommended it and I will check up on it. As I have said I really have no pain, just numbness which makes it hard to know where my foot placement is.

Thank you for accepting into your group. I am so excited to “talk” with your group!

Hi @spanning, welcome to Connect. I'm happy you found us. I have idiopathic small fiber PN but do not have pain with it, only numbness and tingling. Are you able to share a little more about yourself - have you also been diagnosed with neuropathy? Do you have any questions for the group?

John

I live in Sioux Falls SD. I have had several auto immune problems for years( Graves Disease, Alopecia, Fibromyalgia, ) I have had Breast cancer twice and so far the cancer is gone. However the chemo really affects my teeth and about two years after treatment the teeth crack, fillings fall out etc. I had to have what was left of a molar extracted July 2nd. By my regular dentist, never even thoughttomgo to oral surgeon,July 8th I started to get dizzy, feel like falling. The room does not spin. Had continuing problem with the extraction site, I was sent to oral surgeon on Sept 5th who found a pieces of the tooth still there and he took it out but It is now Nov. 3 and that site is still sore, my lips to the left side of my jaw cheek, lower left jaw, left neck, left side of tongue are still numb. I called the oral surgeon asking what I could do and he has not called back. Sept 8th I Iwoke feeling ver6 strange and numb fro. My knees down to my feet in both legs. I have had two I call them episodes of trying to talk but it comes out all jumbled and people say “come again” because they didn’t understand me. I contacted my family dr who is also internal medical dr. She ordered MRI and CT scan, Echo, Ultra sound, and referred me to cardiologist. The echo revealed my ejection refraction was 35 however it was stated it was very hard to read. My other tests that were preformed for all normal. I was referred to a neuralogist who ordered EMG test. I was told by her nurse tha5 I have sensory poly neuropathy and they sent me to a balance clinic. I also was sent to ENT dr who checked me over and said that was no problems there. The latest is the balance clinic did over a 2 Hour study she said that is have a lot going on but would not be more specific except to say that my inner ear balance was no longer working, my eyes were trying to keep my balance but not succeeding so that was why I was feeling dizzy. I was also a huge fall risk. She is having me do some PT. Iin The mean time, my left eyelid has like to just drop when ever it feels like it, started doing that about 2years ago, my right eyelid now drops whenever it feels like as well. I experience numbness all over my body, it feels like my whole. Odd is falling asleep. I even have trouble chewing food because of the left side of my mouth tissues. I no other appointments Except with is the balance team. I sent a message to my neurologist asking what I was supposed to do and alllshe said was eat healthy. She said she didn’t need to see me any more. She left a prescription for gabepenton if I wanted. I don’t have pain, just numbness all over. ( althougth the last two nights my right chin has a spot that has started to hurt. My dr through this year was having trouble regulating my thyroid we don’t know why. I should also mention for about the last two years I have had terrible muscle spasms so an ER dr put me on baclofen. With out those pills, the spas come back so I take that pill every day.

No one has told me want to expect from the polyneurapahy. I have looked on google a little.

I have varying degrees so the numbness all over the body, feeling like falling and feeling like my whole body is going to sleep, so some days I just don’t feel safe driving , I get very dizzy when I look down and going up and down stairs. it is like my legs don’t have any power. My hands can no longer open stuff like I used to, I am losing my strength. my fingers don’t type as well as the6 used to ,
sometimes don’t hit the keys hard ennough to get all letters printed, so I apologize if my typing is bad.

Simply I don’t know what to do. Is there an auto immune connection? Or is this just the lingering result fro 2bouts of chemo that just now sprung up 3years after my last treatment. Or did the tooth extraction instigate some of this reaction?

Is there anyone that has these same problems? I do not have diabetes either. What is the out look? What should I be doing? Should I be getting further medical help? Thank you.

I wish insurance would cover acupuncture.

I typed up a rather long history about what has been going on since July I hope you or someone can find it. Thanks

Hello @spanning, I use Google and Google Scholar (https://scholar.google.com/) a lot in my searches and sometimes the results can be misleading and sometimes pretty scary. I try find articles that are done by reputable organizations and the latest written dates which is where Google Scholar helps a little because you can sort the search results links by year at the left. I do know that chemotherapy has a nasty side effect of neuropathy since it also damages nerves.

I have no medical training or background but I am a little surprised when I read that the neurologist prescribed gabapentin if you don't have any pain and just have numbness all over. The reason I say that is before I was diagnosed with small fiber PN my primary care doctor gave me gabapentin when I complained about the numbness in my feet and legs. It was only after a few weeks and no difference that I told her it wasn't working and she brought in another doctor who asked me more questions, found out I had no associated pain, and told me gabapentin doesn't do anything for numbness. This is when I had an EMG and a referral to a Mayo Clinic neurologist who diagnosed me with small fiber PN.

Here's a few references on chemotherapy induced neuropathy:

Physical interventions for patients suffering from chemotherapy-induced polyneuropathy
-- https://link.springer.com/article/10.1007/s00520-018-4071-y

Peripheral Neuropathy Caused by Chemotherapy
-- https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/peripheral-neuropathy.html

Chemotherapy-induced peripheral neuropathy: an update on the current understanding
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4920214/

I'm tagging @artscaping and @jenniferhunter to see if they may be able to offer some suggestions for you.

@spanning, I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

@spanning, here are some other discussions on Connect with similar symptoms that may be helpful for you.

Groups > Breast Cancer > Breast Cancer and Neuropathy
-- https://connect.mayoclinic.org/discussion/just-to-say-hello/

Groups > Autoimmune Diseases > Autoimmune diagnosing problem
-- https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/

Mayo Clinic also has some information on Balance problems - Symptoms & Causes, Diagnosis & Treatment
-- https://www.mayoclinic.org/diseases-conditions/balance-problems/symptoms-causes/syc-20350474

Hi John, I hope you can see the lengthy post I did this morning, it wasn’t a reply directly to you,but just ask8ng for ideas from anyone too.... look forward to be8ng a part of the group I am so confused right now...

Hi @spanning, I did read through your post and it does help others understand your symptoms and what you are going through. That's why I posted the links to the other group discussions hoping you might read through them to see if anything sounds familiar. If you do see a post by someone you can easily pose a question to that member by using their username with the @ sign. That way they will get an email notification that their name was mentioned in a post.

Are you trying to get an answer for any specific questions?