Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@johnbishop

Hi @maryy, welcome to Connect. I have small fiber peripheral peripheral neuropathy with only numbness and no pain. Can you share a little more about your symptoms and what helps treat the symptoms?

John

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@johnbishop Thank you. I have tingling and numbness. My neuropathy is due MGUS / Monoclonal Gammopathy of Undetermined Significance. Doc recommends Rituxitan /immunosuppressant

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@jenniferhunter

@bethb94 Don't give up because of what tests say. Nerves can get compressed because of tight muscles anywhere in the body, and tight fascial restrictions. Myofascial release (MFR) stretches the fascia so muscles can move normally again. Tests are just looking at a snapshot on a particular day and time. I do get some trigeminal nerve tingling in my face from time to time, and that seems to be caused by tightness in my neck which pulls up into my ear and jaw that is tighter on one side. When my therapist opens this up, it resolves that problem. she does traditional physical therapy with MFR work. See myofascialrelease.com for information. I had a cervical disc problem which generated lots of muscle spasms pulling up to my jaw, and I have thoracic outlet syndrome (TOS) that contributes to one side being too tight. You can ask for a PT evaluation and you can find PTs with MFR training at the website. Not all of them pay for a listing, so you can call Therapy on the Rocks in Sedona, AZ, and ask for names of people who trained there in John Barnes methods. Doing yoga and the "cupping" are also ways that stretch fascia, but if you have tightness in your neck and jaw, that is were a PT needs to work. I hope that information helps. Don't give up.

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Thank you so much for your response. I will keep all that in mind.

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@maryy

@johnbishop Thank you. I have tingling and numbness. My neuropathy is due MGUS / Monoclonal Gammopathy of Undetermined Significance. Doc recommends Rituxitan /immunosuppressant

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Hi @maryy, I'm not familiar with Rituxitan but did a search to check what the side affects and was surprised to find one of the more serious ones was tingling of the hands or feet. The notes said to contact your doctor if you have one of the symptoms.

https://www.rxlist.com/rituxan-side-effects-drug-center.htm

I'm have no medical training or background but that would be a red flag for me to have a discussion with my doctor.

Liked by maryy

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@johnbishop I also read about it and I was worried, plus so many others. Rituximab (Rituxitan) has been the drug of choice for treating peripheral neuropathy due to MGUS when only intravenous immunoglobulin (IVIG) does not work. I tried IVIG only once and it got worse. All I desire, however, is not to use Rituxitan. l don´t like immunosuppressants.

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@maryy

@johnbishop I also read about it and I was worried, plus so many others. Rituximab (Rituxitan) has been the drug of choice for treating peripheral neuropathy due to MGUS when only intravenous immunoglobulin (IVIG) does not work. I tried IVIG only once and it got worse. All I desire, however, is not to use Rituxitan. l don´t like immunosuppressants.

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Hi @maryy, I take supplements for my small fiber peripheral neuropathy that have helped me. It's not a cure but it does help with the symptoms and it's all over the counter vitamins and supplements. I learned about the supplements through a closed Facebook group. They have a website that also has a link to join their Facebook Group – http://solutions2pnpd.com/. I posted a question to the group to find out if anyone has MGUS and has the protocol of supplements helped them. One of the members with MGUS posted that she has been on the protocol for 22 months and that her igm numbers started going down until they were not detected. She also said there were a few members with MGUS in the group. I would recommend joining the group and just learn what it's all about by reading their new member introduction after joining. Once you are a member you can post questions to the group about MGUS and meet other members with the same condition.

You can read my story of how I found the group here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@maryy can you keep us updated?

John

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@johnbishop

Hi @maryy, I take supplements for my small fiber peripheral neuropathy that have helped me. It's not a cure but it does help with the symptoms and it's all over the counter vitamins and supplements. I learned about the supplements through a closed Facebook group. They have a website that also has a link to join their Facebook Group – http://solutions2pnpd.com/. I posted a question to the group to find out if anyone has MGUS and has the protocol of supplements helped them. One of the members with MGUS posted that she has been on the protocol for 22 months and that her igm numbers started going down until they were not detected. She also said there were a few members with MGUS in the group. I would recommend joining the group and just learn what it's all about by reading their new member introduction after joining. Once you are a member you can post questions to the group about MGUS and meet other members with the same condition.

You can read my story of how I found the group here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@maryy can you keep us updated?

John

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@johnbishop thanks for the info. I'll check the links and join the facebook group. I want to learn more about it. I am currently taking D3 and B12

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@johnbishop

Hi @maryy, welcome to Connect. I have small fiber peripheral peripheral neuropathy with only numbness and no pain. Can you share a little more about your symptoms and what helps treat the symptoms?

John

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I'm new to the group. I'm hoping that talking with others who understand helps. I'm a 41 year old female from SC. I have dealt with diabetes for 11 year's now. My numbers stay out of control because I don't change my lifestyle. I'm mad as hell and feel I have been dealt a real crappy life when it comes to my health. I haven't always had best of doctors. I have a tremendous amount of pain in my back. I woke one morning to my right leg shaking uncontrollably, best describe like when a dog scratches with it's leg. Mri's didn't show no reason for my leg doing this, physical therapy did not help, injections the first out of the 3 series worked, the others a waste of time. Here in SC if you ask for pain meds, they look at you as if you are a junkie, especially younger people. About 5 months ago over night both my feet started tingling and fail as if they were numb from being asleep, at times I have sharp pains that go through my ankles, I went to see a foot Dr. He done a biopsy which come back as small sensory nerve damage due to diabetes. He tells me to take the meds that their office has ($35.00/ month,not covered by insurance). I told him for me that was a lot of money, I'm unable to work and some how make It on $600 a month. I ask if any other options. My answer was either take the meds and come back in 2 months or he could not do anything else for me. I have no choice,I get the meds and begin taking them. I knew after the first month that they were not helping me but I wanted to follow doctor's orders got my second bottle, I started having really bad muscle pains in the back of my legs it actually felt like my muscles are deteriorating. After the second smallest bottle was finished I went back for my follow-up to let him know that the meds did not do much good and I also had another problem with my muscles, kissing to diagnose me with restless leg syndrome and I'm going to see a rheumatologist. I have tried to research and understand neuropathy on my own. I I am out that neuropathy is not only caused by diabetes but it could come from a lack of vitamins. I ask Dr how could they tell if it was the lack of vitamins or blame it on my diabetes his response he couldn't. As I mentioned earlier I have not had great doctors. I went back to look at my blood work from previous A1c lab results and I find that a lot of my numbers were very low and should have been corrected a lot dealing with vitamin deficiency, so here I sit off the meds he had me taking,no pain medicine because the doctor said it would not help the pain from neuropathy.lol but…. But in the meantime we're waiting to go to the rheumatologist when I finally pass out and go to sleep that's when I sleep. This is a difficult life with an 11 year old daughter and a 8 week old grandson. I see a lot of you mentioned that Gabapentin did not help it did not help me either I only gained weight with it. My depression has worsened due to lack of sleep and pain. My feet hurt so bad I cannot hardly walk. The medication that the doctor had me take i will put it below because you can order it online. you never know it may help someone else out there. I have been in front of a SC judge and turned down for my disability, mainly only being 41 was a big factor in their decision. I am applying once again but this time with more health problems than before. Anyone know of testing that I can have done to help get my disability approved in South Carolina. Sorry for such The Long blog but I wanted my whole story out. Look forward to being in the group. NeuRx-TF….. It contains a lot of the b vitamins.

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@maryy

@johnbishop thanks for the info. I'll check the links and join the facebook group. I want to learn more about it. I am currently taking D3 and B12

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NeuRx-TF. It's a physician solution. It can be found online. Blue and white bottle. My podiatrist office carried it. $35.00. for pain I got lidocaine patches,cut in half and taped them to the bottom of feet. What we will do to stop the pain. Hope this helps

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Hello @djsgigi, welcome to Connect. I think there are a lot of members on Connect that can relate to what you are going through with the diagnosis. It's good that you are trying to learn as much as you can and be an advocate for your health problems. I did find some information that may be helpful for getting your disability approval.

South Carolina Social Security Disability – Disability Benefits Center
https://www.disabilitybenefitscenter.org/state-social-security-disability/south-carolina

@djsgigi can I ask how you are doing with controlling your diabetes? I have no medical background or training but having your diabetes under control would be a big step to help you.

John

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I'm getting frustrated with pharmacists who treat me like a criminal when I'm getting refills. Pharmacists at Walmart and Costco in Virginia think that they have the right to withhold medicine from elderly people because the state has threatened to take their license away if a patient orders gabapentin and also takes lyrica. One of them said 'there's an opioid epidemic and both medicines are on the controlled substance list' (they aren't opioids, they are anti-seizure medicine, one for daytime because it doesn't make me sleepy, and one that makes me sleepy for nighttime). They interrogated me about my conditions, what my husband does professionally (retired attorney), they doubted that my doctors knew about each other (all of my doctors know each other and have access to my medical information online), they treated me like a criminal, I felt like I was accused and judged guilty of something by these clerk-level people who hold my medicine over my head. Right now, my gabapentin is due on Nov 1st and I don't know if the pharmacy will give it to me. The pharmacist said she wants to 'call my doctor and make sure he knows about the lyrica and the other doctor'. Doctors don't have time for that. If I don't get it I'll have an emergency and have to go to the hospital and get pain relief. She also said she wouldn't fill any prescriptions written by my pain doctor because he hasn't signed the paper giving the state the right to look into his patients' files. Did you read the book 1984 by George Orwell? It's coming true – our government is getting citizens to spy on citizens. Are any of you having trouble getting your medicine? Peggy

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Hi Peggy @pfbacon, I'm sorry you are having so much trouble getting your medication. I'm hoping the states will get their act together sooner rather than later. Maybe you can contact your local representative and challenge them to help you. The state of Virginia has a lot of information on the new laws on their website.

https://www.dhp.virginia.gov/pharmacy/pharmacy_laws_regs.htm

Do you know if they have any chronic pain patient registration list for the state that you can register for and help you get the pain medicine you need?

John

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@johnbishop

Hello @djsgigi, welcome to Connect. I think there are a lot of members on Connect that can relate to what you are going through with the diagnosis. It's good that you are trying to learn as much as you can and be an advocate for your health problems. I did find some information that may be helpful for getting your disability approval.

South Carolina Social Security Disability – Disability Benefits Center
https://www.disabilitybenefitscenter.org/state-social-security-disability/south-carolina

@djsgigi can I ask how you are doing with controlling your diabetes? I have no medical background or training but having your diabetes under control would be a big step to help you.

John

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Hate to admit it but I don't check it,I could eat better and help myself but then I get upset that I have diabetes. if I check my sugar and it's high then I sit there and go into panic attacks wanting it to come down. It's a famn if do and damn if you don't

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My Peripheral Neuropathy started about 10 months ago. I have been to a Neurologist and two Chiropractors and no one will write me a prescription for the ReBuilder Model 2407 Electrical Nerve Stimulator. They all have their own prescription or pulsating laser device and feel threatened by a DMD (Durable Medical Device) that can be used by the patient at home. My feet range from being numb, to hot, to cold when I get out of a hot shower. My hands feel tingly, or ache and sometimes hurt outright.

Thursday I have an appointment with a woman who has been my Cardiologist for the past eight years since my heart attack. Besides three other prescriptions she has me on 5 mg Crestor for the past eight years. I am bringing paperwork to her office (copied from on line sites, one of them being the Mayo Clinic)
which state that one of the side effects of Statins can be Peripheral Neuropathy. I already know that she will claim my PN is caused from diabetes. Among the paperwork I am also bringing a lab report drawn by her office on August 15 which states that my Glucose is 101 and my Cholesterol is 129. Several years ago I was told I was pre-diabetic but have never taken any diabetic medication and was since told there was no need for me to keep testing my blood suger. I stopped taking Crestor on October 15 even though it is said to be dangerous without a doctors advice. Well Thursday I will get her 'advice'!

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Hi, i am new to the group. I have had type 2 diabetes for two years and am taking Metformin. I was having no luck getting my blood sugar down to below 11 until my wife gotboth of us on a Keto diet. Now, most of my readings are average of 7. Today’s was 4.6 before supper after a day of hard work.
I have dealt with the numbness and tingling in both feet, then both legs. It is now above the waist.
I can deal with that, but I also have extreme muscle weakness in both legs which gets worse if I am working on my feet for hours. I haven’t read of muscle weakness in any of the posts I have reviewed. Is anyone else dealing with that effect of neuropathy, and if so, what can be done about it?

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I’d like to know what medications folks are taking to help with the pain from neuropathy?

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