NeuroTalk Support Groups - New Member here with massive new onset of neuropathy symptoms

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - New Member here with massive new onset of neuropathy symptoms (https://www.neurotalk.org/peripheral-neuropathy/255997-massive-onset-neuropathy-symptoms.html)

Welcome, Wade Senior!:)

Congratulations on possibly having found the path to being free of pain. I hope your good luck will hold.

Sometimes with pain I find that I have to try first one thing and then another and keep on tinkering until I find something that works.

Quote:

Originally Posted by jelinx (Post 1291470)

I went to the neurologist in town following my general practitioners referral. He said small fiber neuropathy. He was not a specialist. I looked for a specialty clinic on my own and asked a neurologist to send the referral. I just had that visit about 10 days ago. They did a couple additional blood tests and nothing came up. They did EMG and NCS. Nothing came up. I wasn't expecting anything because I was suspecting small fiber neuropathy and that is not measured with those tests. But they also did do the skin biopsy. My skin biopsy shows axonal swelling in the distal site. They are increasing my nortriptyline to 25 mg a day. This is still a small dose and most literature doesn't find nor tryptoling better than placebo. They're also starting me on gabapentin. The doctors warned me that gabapentin doesn't really do much for small fiber neuropathy. I've done lots of research. I am in my 6th decade. Literature seems to say that it can arise in people of a certain age. And 30 to 50% remain without a known cause. You can find hopeful paragraphs in literature that say it will plateau. You will also hear horror stories at some people lose all sensitivity in all of their skin. Getting the skin biopsy has actually made me more depressed. I obviously knew that something was wrong. Anyone can read my initial post. But just seeing that pathology was found, ie axonal swelling makes it all too real. When axons swell it is often a prelude to further degeneration. So the question for me will be how widespread will this ultimately go. I hear people's suggestions about stopping sugar, stopping alcohol, etc etc. I have not made any real life changes yet. Sometimes I think we should do like Caroline and avoid the doctors and simply live our lives. I wish you best of luck. We have to make a choice when we are faced with going down the rabbit hole of traditional medicine or avoiding it all together. I do have a follow-up appointment with the neurology clinic in May. I will go I suppose. But something deep inside of me tells me that this will play out however it is meant to. Learning to live life in the moment is more important now than ever.

Welcome to the forum and sorry for your diagnosis. Yes, neuropathy is such a beast. One day, you think everything is under control, and the next day you are suffering again. My case is something similar. After months of remission, I have begun to have flare ups again. Done a ton of blood tests, MRI, Nerve conduction studies to no avail. my doctor thinks it is all stress and anxiety related. This forum has helped me a lot and it is a warm feeling to know that you are not alone in the battle, if at all. No medications , but supplements (alpha lipoic acid, acety l carnitine, omega 3 , B12 ) have helped to some extent.

and yes, diet.. It has also helped me.. I got a positive test for gluten antibodies, so, I am on a gluten free diet right now , ..So, worth exploring that option as well, including checking for diabetes/prediabeties.
Nobody knows, where this will lead to, so keeping fingers crossed and hoping for the best .. This disease requires a lot of self-research and self -introspection that is what I have learned in the last two years

the diagnosis and treatment article was great...

I've had this peripheral neuropathy for a year now. I'm 61. It was a gradual progression over several months. I've had every test under the sun. My diagnosis is idiopathic. I can't wear socks or shoes. I wear Birkenstock sandals. I can't walk very far. It stems from the balls of my feet, which feel swollen, wooden & numb. I can't walk flat foot anymore. I can't exercise. My feet cramp, burn & vibrate like a cell phone. It's constant all day until I fall asleep at night. It's difficult to take a shower. It's constant physical & mental torture. I take Gabapentin & it only works about 50%. I've tried all the other usual medications. They either don't work or I have a reaction. Until this hit me, I was a hiker. I climbed all 67 4000 footers in New England, several many times. I'm very depressed & sad. The outlook for my life is dismal. I'm glad my kids are grown & on their own. I go to work & suffer, then come home & sit to watch TV until I go to bed. You aren't alone in this.

Welcome Mary.Lucie. :welcome_sign:

Possibility for HaveMercy

I did read that you had PN, but have you ever heard of something called Erythromelalgia?

I have severe stenosis in the lumbar and cervical areas at multiple levels but I also have had a couple episodes of Erythromelalgia. My hands and feet got so hot I couldn’t shower (Unless I had a cold water shower) and I couldn’t seem to get them cooled down. It passed after a few days.

Just thought I would mention it. It’s something you can look up and see if it makes sense for your situation.

I do hope whatever it is that it resolves itself soon.

Your experience sounds very similar to mine (mine came on overnight, too). How are you doing now?

A great support post many thanks to all that have contributed.
I had a letter from my Neurologist yesterday here in the UK and she has used a clinical diagnosis of Peripheral neuropathy. She is sending me for nerve conduction studies but says even if negative the diagnosis is confirmed...

When nothing else works try acupuncture. It's helping way more than anything else. Gotta change yer diet. Real radical until symptoms are gone. Then you can decide what's b3st going forward with the food. Be well soon.

I feel ya. I am just checking back on this site for the first time in months. I had a similar experience in April 2020. Prior to this I had tingling in my heels for a little less than a year. Then after a few days of buzzing deep in my groin, below my genitals, I suddenly had full blown sensations over my entire body. I saw a local neurologist a couple of times over the next 3 months. THen I finally went to a specialist in Jan 2021. I had a skin biopsy, nerve conduction, multiple blood tests. NOTHING could be found. The biopsy showed "axonal" swelling. On exam, my sensation tests, pin prick tests, vibration tests were essentially normal. I feel no weakness. I am 2 years since the prickling in my heels and a good year and a half from the full blown body wide sensations. They put me on nortriptyline and GABAPENTIN (only 300 mg/day). I am maybe slightly worse...the sensations are not more intense, just more regular and simultaneous. I even get sudden irruptions of red patches all over my body. Sometimes my skin turns mottled, or red from pressure that it never did before. Stress definitely makes me notice it more and if I let it, drives me crazy, but I don't think stress makes it occur more...if that makes sense. If I am worse, it is only slightly...it's hard to know. I still get wicked depressed over it. I will see the neurologist for a follow up in Nov 2021...but deep down I believe I will just have to learn to accept this. AT the last appt, the neurologist said it could be SFN, but at a level below what their tests can confirm.