Living with Neuropathy - Welcome to the group

I have neuropathy not caused by diabetes. Not sure how long I have it because I also suffer from Erythromelalgia which causes burning and redness in my feet and hands, sometimes ears. When the weather gets hot and humid it gets a lot worse, sometimes there is no particular reason. We went to Mayo in Rochester in 2006. They know what it is but no cure. Does anyone suffer from both of these conditions? For several years I contributed my burning legs and knees to that but once it effected my hands, forearms and sometimes upper arms I went to a Neurologist who confirmed that I also have neuropathy.

Hi @johnbishop
I was diagnosed with immune small fiber neuropathy and IVIG is the recommended treatment. I haven’t started it yet. Still processing the dx and what is means for me. It’s been a rough year to say the least.

New here, hello. I was railroaded by Drs trying to treat my symptoms and not looking for the cause, Working in an industrial sheet metal shop, I was breathing metal dust from metal hot work : plasma cutting area. I knew something was badly wrong but symptoms came on slowly, first signs were an ugly sore skin rash, bleeding lesions on back, voice problems, soar throat, nasal congestion, daily nose bleeds, mouth and tongue ulcers, purpling veins in mouth and throat. Now it’s anxiety, panic, fear, depression, and shaking ( tremors) in arms and legs ( peripheral neuropathy). I did not know metal dust was toxic, Since then I have had hair, nail, and urine tests confirming high amounts of lead, mercury, arsenic barium and vanadium. Due to time lapsed since exposure and leaving the job, a blood test for metals is no longer an option, as it doesn’t stay in the blood that long migrating into the soft tissues and bones. How else can I prove exposure definitively ? it is taking my ability to function and support myself away. I desperately need this for health insurance and legal purposes. Thank you, wanting for a little hope, G-

Oh! So different than my symptoms. I've only had an EMG and was diagnosed with Peripheral Neuropathy. Sharp, achy, pins and needles, but no numbness until this last year. It's now migrated into my ankles, up my calves and into my knees. I also have swelling of feet and ankles.
I do have to preface this by saying, I had a toe surgery in 2000 that progressed to CRPS (best to look it up - it's kind of complicated to explain) in both feet. I then developed Lipodermatosclerosis (LDS) about 5 years later. Lipodermatosclerosis is often seen in vascular insufficiency, but all tests were negative for vascular disease, so it was attributed to the CRPS. The doctors I've been to over the years have never seen CRPS, Peripheral Neuropathy and LDS all together. They all produce severe pain in some form or another with no cure, so the only real goal is to reduce the pain - which brought me to this sight.
I also just was told my Vitamin D level is 2!!! The doctor said that this can cause pain, numbness, tingling and weakness. I was started on 50,000 iu of Vitamin D3 once a week which immediately made my symptoms increase 10 fold!!! Which I guess is common. So.... my goal right now is to help my pain as much as possible. Thank you for your response!

Hello @dipperlip1, Welcome to Connect. There are a few other discussions you may want to read and learn what others have shared on symptoms similar to yours. @hotfooted @revisl @jlander @drolker and others may have some suggestions or information to share with you.

-- Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/
-- Erythromelalgia and Myeloproliferative disorders: https://connect.mayoclinic.org/discussion/erythromelalgia-and-myeloproliferative-disorders/
-- How serious is SFN.. My feet hurt so bad when I stand or walk..: https://connect.mayoclinic.org/discussion/how-serious-is-sfn-my-feet-hurt-so-bad-when-i-stand-or-walk/

Erythromelalgia Clinic in Minnesota: https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220

Were you seen at the Erythromelalgia Clinic in Minnesota?

Hi @carlyschneider, I can understand the still processing the diagnosis. It is a lot to take in and it's easy to get buried by anxiety. It's good that you are researching and advocating for yourself. Have you considered any alternative treatments or therapy to see if they might offer some relief from your symptoms?

Have you heard of Myofascial Release Therapy (MFR)? There is a discussion started by @jenniferhunter where you can learn more about it - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/. @artscaping has found considerable relief from her MFR sessions and may be able to share more information with you.

The Foundation for Peripheral Neuropathy also has some complementary and integrative therapies for neuropathy on their website -- https://www.foundationforpn.org/living-well/integrative-therapies/

Thank you @johnbishop for this information! I have not heard of this treatment. I am concerned about the side effects of IVIG and I am just beginning to look into some treatments to manage this. I just saw this morning that there is a group here specifically for TS-HDS SFN!! Is this what you were dx with? I have so many questions for the group!

Hello @leadhead, Welcome to Connect. I'm sorry to hear you are struggling to figure out how to prove exposure to the metal toxins. Here are some references I found that I'm not sure if you have seen that might provide some helpful information. I believe there are additional tests besides a blood test that doctors can use to determine metal poisoning.

Heavy metal pollution in the environment and their toxicological effects on humans:
-- https://www.sciencedirect.com/science/article/pii/S2405844020315346
How do I know if I have heavy metal poisoning? : https://www.healthline.com/health/heavy-metal-poisoning#testing

Here is some information on testing - Heavy Metals -- Labcorp: https://www.labcorp.com/help/patient-test-info/heavy-metals

Are you able to discuss additional testing with your doctor?

@carlyschneider - my diagnosis is idiopathic small fiber PN (possibly genetic) but I don't have the TS-HDS antibodies. Here's the discussion you mentioned:

TS-HDS Antibody and Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/ts-hds-antibody-and-small-fiber-neuropathy/

Oh wow! You’ve been through the ringer! If I’m reading this correct, did your pain symptoms increase after taking vitamin D??? Hoping you can find the best solutions for you to manage your pain.