Just diagnosed....continue testing for causes

Hello @robge, Welcome to Mayo Clinic Connect. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where it will have more visibility with other members who share your symptoms and may be able to offer some suggestions from their experience.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis? How were you diagnosed for neuropathy?

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

@rogbe, I just returned from my first trip to the Mayo. I was there for a week and underwent a medical evaluation with several tests to figure out what is going on. I am a couple of months shy of turning 50 and three years ago, I started with tingling in my arms, wrists and hands. It has progressed to my feet, ankles and lower legs. It is extreme tingling that feels as if i am being pricked with needles and then someone burning the needles. I have explained the excruciating pain as if someone has poured ants or bees on my extremities. Nothing helps with the pain not the medications or the cremes that they have put me on. I saw a Rheumatologist and Neurologist locally and after a year of trying different medications and treatments, they referred me to the Mayo.

I have been diagnosed with Raynauds in my hands and feet. I have a consistent low WBC and even had a bone marrow biopsy to check for Leukaemia. I was negative. The labs they took at the clinic showed low Leukocytes, Neutrophils,Lymphocyted and Monocytes. Although, this has been consistent in my blood work for years.

When the pain starts, I call them "episodes." I have episodes in the morning that are manageable and do not last for long periods of time. I get through them by moving my feet side to side and dance around while I prepare for my workday. My worst episodes are after a shower/bath. They are so extreme. I am not sure why water is a trigger. Although i can wash my hands and face and not ever have an episode. i drink water all day without issues as well. I now only take a full shower twice a week and have to sponge bath the other days. The pain is so severe that I am not able to prepare and put myself through it everyday. When the episodes happen after a bath, I usually run in place until i cant and then I ice my legs and arms until the sensation starts to ease. I layer my legs and arms with ice packs. Probably not good for my skin but it has been the only way to get through it. Episodes have now started to take p[lace in the day time and at night.

I have been on all the medications but nothing seems to work. I go back to the Mayo in April to see a Neurologist and a Hematologist. I am trying to stay positive but its difficult when i spent so much money on this last trip and no solutions or treatments were reached. I dont want to sound like I am not grateful for the things they did rule out but I was hoping to get a little relief. I have lots of faith in the doctors there and continue to pray that "This too shall pass." I am trying to research on my own about SFN and start trying to see how i can help myself. I have not been diagnosed with SFN but I believe that is what they will be looking at in April.

My peripheral neuropathy was 'profound' by the time it was diagnosed. Two of the three major nerves in my legs were non-responsive on the EMG test by 2010.

Obviously this didn't just develop overnight. But I had so many health issues in the 8 years leading up to this diagnosis in 2010, that I actually MISSED the symptoms as they developed.

I thought I was just having my usual aches and pains, and the fact that it got harder and harder for me to go for walks, that I kept stumbling and falling, and even fell backwards out of the shower TWICE, I put all of that down to poor physical condition. I even fell backwards out of the shower at the gym TWICE. it turns out that was because I didn't have balance from my legs, and when I put my head under the shower to rinse my hair, I just fell backwards. I was lucky not to get hurt.

I had to give up my aerobics class because I couldn't balance and couldn't keep up. I moved to water aerobics because I could manage to move in the water.

So, my 2010 my PN was as bad as it ever got. However, I proceeded to develop Small Fiber Neuropathy in my total body, as well as some neuropathies in my Gastrointestinal System. Both since 2010.

I've had every single test known to medical science, including genetic testing for every known cause of PN. Nothing shows up at all.
However, by 2012 I was diagnosed with an Immune Disorder, Primary Immune Deficiency Disease. My Immune System does not make enough of the antibodies G and M, so I was getting sick all the time.

I now have IVIG every 4 weeks (since 2013, and will have IVIG for life). So now I don't get sick, at least! But my Duke Medical Center Immunologist believes that my neuropathy is caused by attacks on my nerves, mounted by my Immune System. She believes the mechanism of attack is cytokines.

I take 4200 mg Gabapentin, Low Dose Naltrexone, and Wellbutrin for pain. When it is really bad I take 4 mg Medrol (methylprednisolone) which is a steroidal anti-inflammatory. I use Medrol very sparingly because it has so many long term side effects, if taken regularly at higher doses.

I wear leg braces (corrects for foot drop and stabilize my legs a bit) and walk with a walker to give me balance and support.

This is just no fun.

Regards, ElaineD

Hello @irmaida, Welcome to Mayo Clinic Connect. Thank you and @elained for sharing your experience and symptoms here on Connect. It helps when we can find others sharing similar symptoms and learning what helps and what hasn't helped. @irmaida I'm hoping you are able to give us an update after you go back to Mayo Clinic in April for additional testing.

SFN is definitely not fun...no happy faces here. Just one day at a time, one step at a time.

Hi @robge Well welcome to the site. My story pretty much mirrors yours. I am 69 years old. I was diagnosed with neuropothy 10 years go. I had some numbness in my feet. I have never had pain. The numbness was equal in both feet. The neuropothy progressed slowly over the years and moved slowly up my lower legs to my knees. Up until 10 months ago I was very active. I live in a ski town where I skied, biked & hiked almost every day when possible. In the last 10 months the numbness has progresses 100 %, both my feet have dropped, my balance is awful, The neuropothy has progressed into my hands, I have lost muscle strength in my legs and teh left side of my back, I need a cain to walk. It has been a difficult 10 months. I have tried acupuncture, pilates, yoga, Physical therapy, egoscue. These all help my mental health but nothing seems to help the numbness or my dropped feet. I have cut way down on sugar and gluten in diet. Again, not much help. I had a decompression procedure (laminectomy). Did not help. My doctors tell me there is nothing that will help my condition including diet. This is all very discouraging but I try to be positive. Its all you can do. If anyone has suggestions I am all ears.
Thats my story.

@ericvnelson, Welcome, you are in a great place to share, explore and learn about neuropathy. My only contribution might be for the numbness in your feet. I get an MFR (myofascial treatment) for my numb feet every week. I can sometimes go for two weeks but my balance, stability, and discomfort increases if I wait too long. I will just let @jenniferhunter see this as well as @johnbishop. Jennifer has all of the links for MFR and John has done a ton of practical research on the numbness aspect. I just might throw in the hand treatment that works for numbness, tingling, and the needle-like pain with which I contend every day. I never leave home without a 3:1 CBD/THC topical that works quickly and lasts a couple of hours or more. I have also used topicals compounded by a special pharmacy and on occasion, some essential oils. My first choice by far is Releaf Balm by P & B (Papa & Barkley). My best to you as you begin your Mayo Connect journey. Be free of suffering, be well and make some time to be happy. We are here for you.

Thanks for your reply @elained . My neurologist diagnosed mine as moderate to severe, but provided no detailed diagnosis other than PN from the EMG and Nerve Conduction studies. He also stated that it is often difficult to find a cause in many cases. I have a strong family history of PN (my mother, father, brother, and aunt all have it which accounts for every blood relative currently living in my family) and no one else in my family will subject themselves to testing so I would like to find out as much as I can genetically. During my initial visit with the neurologist, he asked questions related to Charcot-Marie-Tooth disorder (CMT), but did not explore that any further. I plan to follow up with him about that at the next visit.

Thanks for the information about your journey and what has worked and what has not worked for you. You have been through a lot since your diagnosis in 2010. Glad you found the IVIG. As you stated, this is no fun. Glad there is a community of support available.

Thank you for taking the time to write such a detailed reply. You are in my thoughts.

@johnbishop .
Hi John. Thanks for the welcome. Sorry if I posted in the wrong location.

How I got diagnosed..... I mentioned to my primary care physician that I had experienced numbness, tingling, and lack of feeling in my feet for the past 10 years or so, that I had a strong family history of PN (all my blood relatives have it except my son has not been diagnosed yet). He did an X-ray of my hips and lower back and stated that both looked normal and referred me to a neurologist. On the first visit with the neurologist, he asked questions and did a basic exam and then scheduled me for nerve conduction and EMG testing. Based on those tests, he diagnosed me with PN. Also, I have had severe leg cramps for years which I did not realize might be related to the PN.

I return to the neurologist in late March and have been trying to educate myself since my diagnosis so I know what questions to ask when I go.

Thanks for your reply @ericvnelson. There are a lot of similarities in our cases. I am 53 and although I was just diagnosed, I have been experiencing numbness and loss of feeling in my feet for about 10 years. The numbness has progressed to my knee on my left side and my ankle on the right. Recently, I have also begun noticing numbness in my fingertips and also that the areas affected by the neuropathy are cold - severely cold and they take hours to warm up. I have also had balance issues for years, but it has gotten much worse lately. I am not as active as you, but have done yoga off and on for years and am currently working. My neurologist also suggested that I try Tai Chi and swimming. Online, I began reading about acupuncture for PN, but it seems to be mainly for the pain and I am not experiencing pain. I have also read about deleting glutens and refined sugar from your diet, but have not begun doing that. My neurologist told me that there was no treatment and told me the only thing I could do was live a healthy lifestyle - eat right, eliminate alcohol, don't smoke, exercise, and eat right. I hope you continue to be positive. For me, meditation and mindfulness help me with the positivity and the stress in my life. Agree that it is difficult to remain positive. Wish that there were more that could be done for all of us. I have not heard of egoscue, but googled it and will read up on that.

Thanks again for taking the time to reply and share your story with me. Hoping you find some suggestions that are helpful.

Hello @ irmaida thanks for your reply. Sorry to hear that you are in so much pain. I have the tingling and numbness in my fingers, feet, and legs, but luckily not the pain. Thanks for the tips on how you manage the pain. Glad the ice packs are helping. I read online about heat and heating pads, but it seems that might not work for you.

So sorry to hear that you did not find answers. That is difficult and disheartening. I am also trying to educate myself and see if there is anything I can do to slow the progression, if that is possible. I do hope this will pass and everyone experiencing this can find the answers and relief we are all looking for.

Thanks for your responses.