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?

@johnbishop

@kansasgal, are you able to ask your doctor why your blood pressure is so high even taking your current BP medications? I would think they would be able to come up with some kind of treatment plan to lower it.

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GP sends me to pain clinic, pain clinic send me to neurologist, neurologist sends me to GP. Still no relief. Cymbalta gave me heart palpitations & PVC's, so neurologist switching me to Lyrica. Wow, really depressed & in pain from stopping the anti-depressant 3x/day (Cymbalta). Now BP is even higher. Do I even dare to ask about a patch?

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@kansasgal

GP sends me to pain clinic, pain clinic send me to neurologist, neurologist sends me to GP. Still no relief. Cymbalta gave me heart palpitations & PVC's, so neurologist switching me to Lyrica. Wow, really depressed & in pain from stopping the anti-depressant 3x/day (Cymbalta). Now BP is even higher. Do I even dare to ask about a patch?

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@kansasgal did you see the post to you by @jenniferhunter? She shared some really good alternatives that may help with your pain. Here is a link to her post earlier in this discussion.

https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=60#comment-268742

Liked by Jennifer Hunter

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@johnbishop

@kansasgal did you see the post to you by @jenniferhunter? She shared some really good alternatives that may help with your pain. Here is a link to her post earlier in this discussion.

https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=60#comment-268742

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@johnbishop Thanks, John! You do a great job sharing information.

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@kansasgal

GP sends me to pain clinic, pain clinic send me to neurologist, neurologist sends me to GP. Still no relief. Cymbalta gave me heart palpitations & PVC's, so neurologist switching me to Lyrica. Wow, really depressed & in pain from stopping the anti-depressant 3x/day (Cymbalta). Now BP is even higher. Do I even dare to ask about a patch?

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you need to be your own best advocate — keep pushing — ask for what you feel you need — you might want to consider another neurologist — not all of them are as good with neuropathy; find one that will work for you

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@kansasgal

GP sends me to pain clinic, pain clinic send me to neurologist, neurologist sends me to GP. Still no relief. Cymbalta gave me heart palpitations & PVC's, so neurologist switching me to Lyrica. Wow, really depressed & in pain from stopping the anti-depressant 3x/day (Cymbalta). Now BP is even higher. Do I even dare to ask about a patch?

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I have been going around in circles with doctors as you have, but my BP seems to drop but my weight gain stayed the same for 4 months and I barely eat anything at all due to ain I have every time I do eat. The doctors think I have MS but won't test me for it. They are testing for everything else and it's driving me crazy knowing everything is fine and keep getting the medication I don't need. They say I have a chronic illness and put me on depression medication.

What is MS? Do I have anything to worry about, since it's on my report from 1 doctor and they don't want to test me further, or should I leave it alone?

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@david33

I have been going around in circles with doctors as you have, but my BP seems to drop but my weight gain stayed the same for 4 months and I barely eat anything at all due to ain I have every time I do eat. The doctors think I have MS but won't test me for it. They are testing for everything else and it's driving me crazy knowing everything is fine and keep getting the medication I don't need. They say I have a chronic illness and put me on depression medication.

What is MS? Do I have anything to worry about, since it's on my report from 1 doctor and they don't want to test me further, or should I leave it alone?

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@david33 Join the club of feeling like you are being given the runaround. So many doctors want to test you, diagnose, and then tell you they can do nothing for you. It is a very strange path to learn that you are fending for yourself. Try to read all you can from this site and Peripheral Neuropathy group in Chicago area that casts a wide net. I found I could not live with any of the anti-seizure medications and have found alternatives that have made my life reasonably symptom free over last 10 years. But never give up, your condition and your potential solutions may be different than anyone you will talk to regarding PN. Good luck, I wish you success asap.
MS probably refers to multiple sclerosis. Strange they would suggest it as possible, then not go forward with test for it.

Liked by elizabej

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@david33

I have been going around in circles with doctors as you have, but my BP seems to drop but my weight gain stayed the same for 4 months and I barely eat anything at all due to ain I have every time I do eat. The doctors think I have MS but won't test me for it. They are testing for everything else and it's driving me crazy knowing everything is fine and keep getting the medication I don't need. They say I have a chronic illness and put me on depression medication.

What is MS? Do I have anything to worry about, since it's on my report from 1 doctor and they don't want to test me further, or should I leave it alone?

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Hi @david33, Here's some information on Multiple Sclerosis from Mayo Clinic that may be helpful.

Multiple sclerosis – Symptoms & causes
https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

Have you thought about getting a second opinion? I agree with @deankmn that it sounds strange that the doctor would suggest you have MS and put it in your charts without any diagnosis/tests.

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Hi there, My husband was diagnosed with neuropathy about 2 years ago. He is on Medicare and has a supplement insurance also. We have called the Mayo Clinic in Phoenix and Minneapolis. We were told that their programs were full and they were not accepting anymore Medicare patients. Do you know of anyway that he can get into the Mayo Clinic to find out what to do or expect. Unfortunately where we are living his doctors have just said this is what you have, the information we do have come from groups like this one. thank you for your help.

Liked by grandmaR

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Hello @alaskapat, welcome to Connect. It might be worth a call to the Rochester, Minnesota Mayo Clinic Campus to see if you can get an appointment for your husband. You can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Also, you can find out more about billing and insurance at Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

Will your husbands Medicare advantage or supplement insurance plan give him an approval to be seen at Mayo Clinic? I was wondering if a referral from his doctor or insurance plan approval would help get an appointment.

Liked by johnhans

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@alaskapat

Hi there, My husband was diagnosed with neuropathy about 2 years ago. He is on Medicare and has a supplement insurance also. We have called the Mayo Clinic in Phoenix and Minneapolis. We were told that their programs were full and they were not accepting anymore Medicare patients. Do you know of anyway that he can get into the Mayo Clinic to find out what to do or expect. Unfortunately where we are living his doctors have just said this is what you have, the information we do have come from groups like this one. thank you for your help.

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I have a feeling that the key to Mayo Clinic is to become a patient before you are on Medicare. We are patients at Mayo Jax and became patients before Medicare. But we cannot get in to one of their primary care clinics now that we are on Medicare since we never went before.

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I had neuropathy so severe in my feet I could hardly bear to stand on my own two feet, had 3 toes without sensation. You could put a needle in them. So with both pain and numbness I begged my rheumatologist for a nerve study. Sooooo, they set one up. Went to guys office, the man's face is deeply flushed, eyes dripping, nose leaking. He was a mess. Did my nerve study, said no findings of neuropathy. Found out the doc had a terrible cocaine problem. Lost his license to practice. But, my rheumatologist was satisfied. There, see, you don't have neuropathy!!!

So, dropped my rheumatologist, neurologist, went back to my GP, who dropped down my meds, tapering those that needed to be. Not very effective anyway, plus GP was not allowed to prescribe or oversee the methotrexate. Found a good foot doctor who found ways to bring relief by taping my feet to transfer where the pressure would be placed, making his own inserts for my shoes, allowing for the constantly swollen nerves to relax and a chance to cool down the enflamation. Took a year of weekly, sometimes twice a week visits. My feet still give me trouble, but I went from crisis off the charts pain, to just annoying, but I can still walk pain.

Then came…trigeminal neuralgia. 😳The devil. I know neuropathy and the great pain it causes. God bless those wrestling this monster daily! Finding ways to help relieve the suffering besides the meds that mess with the mind, like those being handed out like candy for everything from neuropathy to RA, fibro, muscle aches and pains is hard. (Gabapentin, neurontin, lyrica, etc.) Some are anticonvulsants, which scares me more than the opioids I use.

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@jmjlove

I had neuropathy so severe in my feet I could hardly bear to stand on my own two feet, had 3 toes without sensation. You could put a needle in them. So with both pain and numbness I begged my rheumatologist for a nerve study. Sooooo, they set one up. Went to guys office, the man's face is deeply flushed, eyes dripping, nose leaking. He was a mess. Did my nerve study, said no findings of neuropathy. Found out the doc had a terrible cocaine problem. Lost his license to practice. But, my rheumatologist was satisfied. There, see, you don't have neuropathy!!!

So, dropped my rheumatologist, neurologist, went back to my GP, who dropped down my meds, tapering those that needed to be. Not very effective anyway, plus GP was not allowed to prescribe or oversee the methotrexate. Found a good foot doctor who found ways to bring relief by taping my feet to transfer where the pressure would be placed, making his own inserts for my shoes, allowing for the constantly swollen nerves to relax and a chance to cool down the enflamation. Took a year of weekly, sometimes twice a week visits. My feet still give me trouble, but I went from crisis off the charts pain, to just annoying, but I can still walk pain.

Then came…trigeminal neuralgia. 😳The devil. I know neuropathy and the great pain it causes. God bless those wrestling this monster daily! Finding ways to help relieve the suffering besides the meds that mess with the mind, like those being handed out like candy for everything from neuropathy to RA, fibro, muscle aches and pains is hard. (Gabapentin, neurontin, lyrica, etc.) Some are anticonvulsants, which scares me more than the opioids I use.

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That's very interesting … I don't know what methotrexate is. I take gaba and Lyrica every day, it calms my nervous system which quiets the pain, and has no side effects. Pain medications, other than otc ones, make me sleepy so I don't take them unless pain keeps me awake, then it's okay to be sleepy. Peggy

Liked by jmjlove

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@david33

I have been going around in circles with doctors as you have, but my BP seems to drop but my weight gain stayed the same for 4 months and I barely eat anything at all due to ain I have every time I do eat. The doctors think I have MS but won't test me for it. They are testing for everything else and it's driving me crazy knowing everything is fine and keep getting the medication I don't need. They say I have a chronic illness and put me on depression medication.

What is MS? Do I have anything to worry about, since it's on my report from 1 doctor and they don't want to test me further, or should I leave it alone?

Jump to this post

@david33
Good morning,
I don't want to scare you, but MS is a very serious disease! If the doctor thinks you might have it, but won't test for it, it might be time for you to find a new doctor. If you do have MS, your doctor will want to start treating you for it immediately.
I do suggest you find a new doctor!
Ronnie (GRANDMAr)

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@alaskapat

Hi there, My husband was diagnosed with neuropathy about 2 years ago. He is on Medicare and has a supplement insurance also. We have called the Mayo Clinic in Phoenix and Minneapolis. We were told that their programs were full and they were not accepting anymore Medicare patients. Do you know of anyway that he can get into the Mayo Clinic to find out what to do or expect. Unfortunately where we are living his doctors have just said this is what you have, the information we do have come from groups like this one. thank you for your help.

Jump to this post

@alaskapat
Good Morning!
I've tried to get an appointment at Mayo, in Jacksonville, Florida, multiple times. I've been told the same thing. This last time, I even had a script from my neurosurgeon, but no luck!
Good luck to you!
Ronnie (GRANDMAr)

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@jmjlove

I had neuropathy so severe in my feet I could hardly bear to stand on my own two feet, had 3 toes without sensation. You could put a needle in them. So with both pain and numbness I begged my rheumatologist for a nerve study. Sooooo, they set one up. Went to guys office, the man's face is deeply flushed, eyes dripping, nose leaking. He was a mess. Did my nerve study, said no findings of neuropathy. Found out the doc had a terrible cocaine problem. Lost his license to practice. But, my rheumatologist was satisfied. There, see, you don't have neuropathy!!!

So, dropped my rheumatologist, neurologist, went back to my GP, who dropped down my meds, tapering those that needed to be. Not very effective anyway, plus GP was not allowed to prescribe or oversee the methotrexate. Found a good foot doctor who found ways to bring relief by taping my feet to transfer where the pressure would be placed, making his own inserts for my shoes, allowing for the constantly swollen nerves to relax and a chance to cool down the enflamation. Took a year of weekly, sometimes twice a week visits. My feet still give me trouble, but I went from crisis off the charts pain, to just annoying, but I can still walk pain.

Then came…trigeminal neuralgia. 😳The devil. I know neuropathy and the great pain it causes. God bless those wrestling this monster daily! Finding ways to help relieve the suffering besides the meds that mess with the mind, like those being handed out like candy for everything from neuropathy to RA, fibro, muscle aches and pains is hard. (Gabapentin, neurontin, lyrica, etc.) Some are anticonvulsants, which scares me more than the opioids I use.

Jump to this post

I had a lot of pain and numbness in my feet. Went to a podiatrist who said I have Mortons neuroma, he put metatarsal pads in my shoes. He said if I wanted he could surgically remove the neuromas. The pads have helped a lot and the claw toes on my left foot have straightened a lot.

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