Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

I AM TRYING TO UNSUBSCRIBE FROM THE MAYO BLOGS AS I HAVE A PROBLEM WITH SO MUCH MAIL COMING IN . PLEASE HELP ME TO DISCONNECT….I AM 86 AND TOO OLD TO KEEP UP WITH ALL THE MAIL….THANK YOU. ALLEGRO

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Contact your local Legal Services or Legal Aid office and the closest law school community clinic.

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@allegro

I AM TRYING TO UNSUBSCRIBE FROM THE MAYO BLOGS AS I HAVE A PROBLEM WITH SO MUCH MAIL COMING IN . PLEASE HELP ME TO DISCONNECT….I AM 86 AND TOO OLD TO KEEP UP WITH ALL THE MAIL….THANK YOU. ALLEGRO

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Hi @allegro, just go to the bottom of the email notification you see when you read this message and click the link that says Unsubscribe from this thread. That will stop all of the email notifications from this discussion.

John

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@allegro

I AM TRYING TO UNSUBSCRIBE FROM THE MAYO BLOGS AS I HAVE A PROBLEM WITH SO MUCH MAIL COMING IN . PLEASE HELP ME TO DISCONNECT….I AM 86 AND TOO OLD TO KEEP UP WITH ALL THE MAIL….THANK YOU. ALLEGRO

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That does not do it. so don't tell me to go to the bottom of the page.

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@allegro

I AM TRYING TO UNSUBSCRIBE FROM THE MAYO BLOGS AS I HAVE A PROBLEM WITH SO MUCH MAIL COMING IN . PLEASE HELP ME TO DISCONNECT….I AM 86 AND TOO OLD TO KEEP UP WITH ALL THE MAIL….THANK YOU. ALLEGRO

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@tusconguy — the bottom of the page of the email message/notification you received has an unsubscribe link on it. Or you can go to your profile and select Account Settings, scroll to the bottom to Email Notifications and select Edit to unsubscribe to all notifications.

Hope this helps.
John

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@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

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@gman007, what does CoQ10 have to do with statins? It sounds like you’ve done some research on this. I’m on rosuvastatin (generic Crestor). I don’t really know what CoQ10 is but my parents who were Amway/Nutrilite distributors and carried it, thought it was wonderful and that I should take it.

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@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

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@johnbishop, I have peripheral and autonomic neuropathy due to diabetes. My primary and my endocrinologist wanted me on meds to reduce cholesterol & to help protect me from increased risk of stroke &/or heart attack. At first I was on Lipitor, then Crestor, then the generic, rosuvastatin. I never heard of a connection between statins and neuropathy as you showed in the links you provided from your research. Hopefully my medical providers are aware of these things. When I have labs for lipids the results are great. I have CKD and will be needing a kidney transplant at some point. I was at Mayo in Rochester for pretransplant evaluation and those providers (lots of them including endocrinologists, nephrologists, surgeons, nutritionists, pharmacists etc.) all thought the same.

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@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

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Hello @cahunt57, I take Qunol which has up to 3x better absorption than regular CoQ10. Mayo Clinic has some information here on your question:

Coenzyme Q10: Can it prevent statin side effects?
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/expert-answers/coenzyme-q10/faq-20058176

John

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@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

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@cehunt57

To all in the statin conversation. I take a small amount of a statin and get along OK with it. Even if your cholesterol is not super-high, statins have a protected effect on the blood vessells, making them stronger, if you will. Thereby they are good for folks who might have aneurysms, be susceptible to DVTs etc.

Here is a quote from Mayo's website about the advantages of statins (outside of the cholesterol lowering use), this quote is taken from https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statins/art-20045772

"What other benefits do statins have? Statins may have benefits other than just lowering your cholesterol. One promising benefit seems to be their anti-inflammatory properties, which help stabilize the lining of blood vessels. In the heart, healthier blood vessel linings would make plaques less likely to rupture, thereby reducing the chance of a heart attack. Researchers are also studying whether statin therapy could prevent venous thrombosis, which includes blood clots in the lungs (pulmonary embolism) or deep veins (deep vein thrombosis, or DVT)."

I don't like taking meds either but I think it is important to look carefully at the pros and cons and then make an informed decision.

Teresa

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@allegro

I AM TRYING TO UNSUBSCRIBE FROM THE MAYO BLOGS AS I HAVE A PROBLEM WITH SO MUCH MAIL COMING IN . PLEASE HELP ME TO DISCONNECT….I AM 86 AND TOO OLD TO KEEP UP WITH ALL THE MAIL….THANK YOU. ALLEGRO

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Here are further instructions about using Connect, including:
– How to Set Notification Preferences
– How to Subscribe or Unsubscribe from a Discussion
– How to Stop or Restart all Notifications

https://connect.mayoclinic.org/get-started-on-connect/

If you continue to receive email notifications after unsubscribing, please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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@tucsonguy

Hello everyone,

I am new to this group. I am currently in the final stages of my physical for Chronic Kidney Disease. I am planning to get a kidney transplant. I am a type 2 diabetic since 1993. I've been treated for neuropathy for about five years. I take Lyrica and Tramadol for the pain mainly in my left leg and foot. When it flairs up it is debilitating. They tell me it is caused by diabetes. It is treated by my endocrinologist who I see every three months. I am hoping to get information from members of this group by sharing how they are being treated for all their complications.

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Hi Bob @tucsonguy. I’m Cheryl @cehunt57 that @colleenyoung referred to on August 14. I’m sorry it took so long for me to respond. I was having some computer/technology issues around that time. Colleen referred me because I think we may have some things in common. I am type 1 insulin dependent diabetic since 1975. I’ve also had many of the complications including neuropathy (both peripheral and autonomic) and CKD, plus others. The peripheral neuropathy affected my hands with numbness, loss of dexterity & fine motor coordination, tingling, itching, burning, throbbing and aching. Thank God I didn’t have symptoms in my feet. In the 1980’s I got an endocrinologist and a glucometer. I also was referred to a neurologist who did EMG testing. The only treatment offered was to take vitamin B and ibuprofen. I was told I also should have surgery for carpal tunnel syndrome and that diabetics are more prone to things like that and “trigger fingers”. It was also around that time that I found out that there is no ailment that a diabetic can have that doesn’t have some effect on the diabetes and vice versa, not even the common cold! Over the next few decades I added more complications and had experienced more meds, treatments and medical regimens. The thing that was most helpful was blood glucose testing and tight control. I had an insulin pump at one point which helped bring the HbA1c down except that Ihad developed hypoglycemia unawareness. My blood sugar would bounce between 20 – 600 all in the course of a day. I was at the mercy of others to rescue me and treat the lows! In 2005 I had a pancreas transplant. It was like my own personal miracle. For the first time I had a normal HbA1c (5.3). The neuropathy, retinopathy & nephropathy all improved and stabilized. I did not become insulin independent but could stay in blood glucose range with just a fraction of the pretransplant dose of insulin. The hypoglycemia unawareness disappeared. Everything stayed pretty stable for about 11 years (twice the usual lifespan of a transplanted pancreas). In 2016 I started to have some decline in kidney function. I met criteria to be listed for kidney transplant. I went through two pretransplant evaluations at different facilities. I was approved and accepted at both facilities. I chose Mayo in Rochester. I’m from MN. I go back in September for an annual review. My transplant listing status is currently inactive because I’ve had an improvement in kidney function last year. I’m trying to be proactive and am looking for a living kidney donor for a preemptive transplant. More importantly I’m trying to live out the Christian faith I proclaim and trust God that this journey will end the way it is supposed to. Wishing and praying the best for you as you travel your own journey.

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@tucsonguy

Hello everyone,

I am new to this group. I am currently in the final stages of my physical for Chronic Kidney Disease. I am planning to get a kidney transplant. I am a type 2 diabetic since 1993. I've been treated for neuropathy for about five years. I take Lyrica and Tramadol for the pain mainly in my left leg and foot. When it flairs up it is debilitating. They tell me it is caused by diabetes. It is treated by my endocrinologist who I see every three months. I am hoping to get information from members of this group by sharing how they are being treated for all their complications.

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Hi Cheryl,

Thank you for sharing your journey. I've been diabetic for about 25 years and the kidney failure is due to the diabetes. I just completed my physical and hopefully will pass the committee tomorrow. I am very lucky to have a living donor who will start her physical soon. I currently am on a Medtronic CGM pump which helps keep my BS fairly under control. I'll keep you updated as I go through the process.

Liked by cehunt57

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I just have started experiencing neuropathy. There is a possible diagnosis of gastroparesis that I am going to be evaluated for in early October. I have trouble now sleeping at night due to pins and needles and numbness. It all just started happening at once. I had a vitamin b 12 deficiency I was unaware of, and I wonder if that is what caused it. I have been in the hospital dealing with my stomach pain and immobility twice in the last month. No one even mentioned neuropathy, etc, when I mentioned that I had pins and needles, not even my GP. My GI just mentioned it. I have had controlled type 2 diabetes for 8 years (A1Cs under 7.0 and mostly under 6.5). I took metforim for years (which causes B 12 deficiency but my doctor didn't test me for), but now they took me off all my meds and that has caused a lot of anxiety. I can't eat a lot, so that my sugars are ok, but not where they should be. All these doctors work in isolation, but I have now made an appointment to see a neurologist. I live in Philadelphia and am shocked at the low level of insight doctors have into diabetes. I am now also working with an endo and have an appointment with another. I wondered if anyone had this dramatic turn of events in their lives. Sleeping has become hard. I am only 48 and work and have kids. I am in kind of a panic state. Any insights, treatment ideas, advice. Thanks!

Liked by cehunt57

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@nikkig

I just have started experiencing neuropathy. There is a possible diagnosis of gastroparesis that I am going to be evaluated for in early October. I have trouble now sleeping at night due to pins and needles and numbness. It all just started happening at once. I had a vitamin b 12 deficiency I was unaware of, and I wonder if that is what caused it. I have been in the hospital dealing with my stomach pain and immobility twice in the last month. No one even mentioned neuropathy, etc, when I mentioned that I had pins and needles, not even my GP. My GI just mentioned it. I have had controlled type 2 diabetes for 8 years (A1Cs under 7.0 and mostly under 6.5). I took metforim for years (which causes B 12 deficiency but my doctor didn't test me for), but now they took me off all my meds and that has caused a lot of anxiety. I can't eat a lot, so that my sugars are ok, but not where they should be. All these doctors work in isolation, but I have now made an appointment to see a neurologist. I live in Philadelphia and am shocked at the low level of insight doctors have into diabetes. I am now also working with an endo and have an appointment with another. I wondered if anyone had this dramatic turn of events in their lives. Sleeping has become hard. I am only 48 and work and have kids. I am in kind of a panic state. Any insights, treatment ideas, advice. Thanks!

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Hello @nikkig — Welcome to Connect. I'm sorry to hear that you are having trouble sleeping due to the pins, needles and numbness in the legs. I'm sure it's not much consolation but you are not alone. There is a connection between diabetes and neuropathy. There is another discussion that you may want to read through and post any questions you might have:

Groups > Neuropathy > Diabetic Neuropathy progressing?
https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/

Here are a few other links with information on diabetic neuropathy:

Mayo Clinic – Diabetic Neuropathy – Diagnosis & Treatment
https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/diagnosis-treatment/drc-20371587

John

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My name is Becki. I am experiencing severe nerve pain in my left hand. I was diagnosed with peripheral neuropathy about 18 months ago. Within the last two weeks my left hand in particular has gotten much worse. My next appointment with my neurologist isn’t until December. Should I see my primary care doc?

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