Does anyone have neuropathy related to MGUS?

@tracypage I'm lucky in that mine doesn't include pain. I have IgA Kappa MGUS with a small M spike. Neurology can result from other causes as well, such as my Celiac Disease. Did she give you a treatment plan? I try to exercise every day; it seems to help balance and slowing the progression.

@tracypage where exactly do you feel your pain? That’s my biggest complaint, not much with the tingling or numbness….yet

@kayabbott I am in physical therapy and we are working on balance because suddenly mine sucks and never had before…. I put this in another thread but I have essential tremors that are much worse but it doesn’t seem to gain any attention from the docs when I bring it up.

I am IgM Kappa.

Yes, they have ruled out everything else and think it is IgM. I am stunned by how many things can cause this but the neurologist seemed quite comfortable with the diagnosis.

@positivethinking I have had peripheral neuropathy since a year before they diagnosed me with MGUS. It seems, from what I have read, that people with high Lambda (λ) type: A patient's M-protein may have lambda light chains. A low FLC kappa-lambda ratio generally indicates an overproduction of lambda chains.

It is under control only by my making significant changes to my diet, exercise, stress levels, and home treatment programs. It is now about 60-70 percent better symptom-wise after a year of modifying my diet, exercising, stress management, and taking specific supplements like Alpha Lipoic Acid, PEA, Omega-3 Fish oil, etc.

@circawdm what type of diet are you on? Low sugar?

@positivethinking

Mostly in my legs but all of my legs now. Some in my hands and tingling in my torso and sometimes lips.

You know for years they would ask me if I had symptoms and neuropathy and I say “yeah sure” but now I know for certain what this is like. The tingling/pins and needles mainly happens when I sit/stand too long in one place or drive. The pain mainly at night. I am noticing the pins and needles is much more dramatic than it used to be and pain management says I have some sensation loss in my toes now.

@circawdm

I think your MGUS type also may cause more issues. It seems IgM has different types of potential neuropathies that mostly relate to IgM being a heavier immunoglobulin than IgG and IgA.

I started really feeling this when my IgM got above 800.

I have vacillated, I was at 1400 last spring and now down to 900 but I don’t notice lesser neuropathy except with the cymbalta. PT did teach me some exercises that have helped.

@positivethinking

I was part of a study last year that lowered my FLC ratio but didn’t change the neuropathy. For what it’s worth. They used a gut antibiotic for 4 weeks I think and lowered me into the normal range but a few months later it was back up.

It is part of a larger look to see if disease can be managed with a plant based diet.

@tracypage sorry to hear about how your symptoms are so widespread 🥺. Although my biggest complaint is in the toes on my left foot, it seems so minor to the symptoms others are having on this forum. It amazes me how little toes can cause such pain that every step is agony. Thank goodness it’s only on the one foot (for now) so I just limp. Limping causes other issues too in knees and hips so I try to limit that the best I can

@positivethinking OK, here goes. This is NOT short.

NO sugar is part of the Mediterranean Diet/Low-Inflammation Diet. Sugar, red meat, fried foods/fast or processed foods, and alcohol are all HIGHLY inflammatory things. So, on the Mediterranean Diet (Google it), people are encouraged to cut out those things. It's not easy for some, but if you cannot do it, you will not reduce the inflammation in your body that's causing the nerves to be inflamed and irritated, which is causing your symptoms. If you have diabetes or an autoimmune disease, of course, those need to be under excellent control also.

I eat fish and chicken in moderation, plenty of vegetables, and most fruits, except those very high in sugar. I eat whole-grain breads, not white bread or other breads that are just expensive but still high in sugar. Keeping your weight **normal** is also very important. Caffeine is a big nerve irritant. So, again, if you want to do all you can to calm down nerve inflammation and irritated nerve symptoms, cut out caffeine. Drink no caffeine coffee and tea. Or drink herbal teas.

It's a real lifestyle change, but if you want to do things that cut down the symptoms and help build healthy nerves and prevent what nerves you have left from being killed off, you need to do these things -- for life.

Supplements that are vitamins and spices, mostly, that are anti-oxidant and anti-inflammatory, are D3, Alpha Lipoic Acid, Omega-3 Fish Oil caplets, garlic, turmeric, ginger, PEA, C, and E. See below for why they work. If you are on a blood thinner or have other serious medical issues, ask your doctor first, but most of these are very safe if you do not mega-dose. **Articles you can find show the safe maximum dose for these. Start slow, then increase dosage if they agree with you.

**Key Supplements & Their Benefits:**

Omega-3 Fatty Acids (Fish Oil): Potent anti-inflammatory, reducing cytokines and vascular inflammation; essential for heart health.

Curcumin (Turmeric): Blocks inflammatory pathways, comparable to NSAIDs for pain relief in arthritis, but safer long-term.

Ginger: Inhibits inflammation-causing chemicals and enzymes, shows promise in RA and musculoskeletal pain.

Green Tea Extract: Rich in polyphenols (EGCG) that fight inflammation and oxidative stress.

Vitamin D3: Modulates immune response, is crucial for immunity, and reduces pro-inflammatory cells.

Quercetin: Reduces inflammatory cytokines and improves RA symptoms and inflammatory markers.

Bromelain: An enzyme from pineapple with anti-inflammatory effects.

Garlic: Supports immune health and helps fight inflammation.

Spirulina: A blue-green algae with anti-inflammatory properties.

And those I listed above, like Alpha Lipoic Acid, PEA, etc. I can get all of these on Amazon. If you can cook with 2-3 cloves of garlic a day, skip the supplement.

Extra Virgin Olive oil is one of the very BEST anti-inflammatories. 3-4 tablespoons a day in cooking and on salads gives you a good amount. People in the Mediterranean countries, like Greece, have VERY low heart problems or inflammatory diseases due to their diet!

Exercising daily for 20-30 minutes is very helpful. If you have peripheral neuropathy symptoms (burning, tingling, numbness, nerve pain) in your feet, which is very common, YouTube has physical therapists showing you the exercises that are best for your feet and legs. You need to get the circulation going there! It feeds the nerves. You can also get massage machines (Amazon also) specifically for peripheral neuropathy! I bought special shoes and wear a diabetic support insole for people with PN.

Realize that in medical school, most doctors are not taught how to deal with PN not due to diabetes or an autoimmune disease. So they give people with MGUS Gabapentin or Lyrica or something like that to mask the pain/symptoms, but it doesn't do *anything at all* to help the cause or to help build new healthy nerves and slow down progression! So some may say this is a bunch of BS, but it is not, if you read MEDICAL articles on treating peripheral neuropathy using a change of diet, exercise, supplements, etc.

That's it. You can help reduce symptoms so you can walk and sleep and have better balance, but you MUST take charge of what you eat, drink, and exercise, learn stress control if you are anxious or highly stressed, and do things at home to help as well. If you do, you will notice a difference in time. If any of the supplements cause stomach issues, lower the dose, and ALWAYS take them with or after a full meal!

That's it, and I know it is a lot, but I guarantee you it has worked for millions of people all over the world who want true relief. It just takes willpower and buying healthy things to eat at home. If you don't have junk food, candy or booze at home, you won't eat or drink them! 🙂