Hi maybe I was commicationing to the wrong group. I don't know were to begin however there are problems and concerns about my struggles with sweating constantly wondering what was going on with me. PCP had no clue what was going on. I thought that I was going through the change at this late stage of my life. People looked at me like I was crazy. So I suffered in silence and disillusion. Blood work done no diabetes thyroid a little weak cholesterol is a little high. Numbness every where the list goes on. Eye problems, experiencing hair loss, appetite gone, short term memory now, tired of talking to these so call Psy doctors ugh don't know what to do. Psy Meds did a number on me , no family, no friends they're dead or moved away. Hope trying to keep it alive.
I think a neurologist can put all those symptoms together and come up with a diagnosis. Then you can work on treating each symptom. I have several of yours. For dry eyes, I use Restasis. For dry mouth, Pilocarpine prn. Those are both prescribed. My sweating is most intense on my face, neck and scalp. Every morning those parts of me are sweaty. I carry a bandanna in my car, and stopped trying to wear makeup on my face. Tegretol (carbamazepine) helps a lot with those and other neuropathy issues (palpations, itching). I recently gave up sugar and unhealthy carbs. That only lasted about 3 weeks, but I definitely noticed an improvement in how I felt. I wish I could kick the sugar and carb habit, it’s a constant struggle for me. Anyway, once you get a diagnosis, start reading, reading, reading! You have to be your own expert. Coming here is a great thing to do.
Hi maybe I was commicationing to the wrong group. I don't know were to begin however there are problems and concerns about my struggles with sweating constantly wondering what was going on with me. PCP had no clue what was going on. I thought that I was going through the change at this late stage of my life. People looked at me like I was crazy. So I suffered in silence and disillusion. Blood work done no diabetes thyroid a little weak cholesterol is a little high. Numbness every where the list goes on. Eye problems, experiencing hair loss, appetite gone, short term memory now, tired of talking to these so call Psy doctors ugh don't know what to do. Psy Meds did a number on me , no family, no friends they're dead or moved away. Hope trying to keep it alive.
Neuropathy has a wide spectrum, and in my experience, neurologists are the doctors best equipped to diagnose and possibly offer treatment. My Rhode Island neurologist, teaching at Brown University sought a second opinion from her neurologist colleague at Massachusetts General in Boston. They both settled on an autoimmune cause for my neuropathy, based on a number of blood tests, EMG’s, a spinal tap, and a nerve biopsy. I had to be willing to go through those tests and okay their recommendation for iVIG infusions to reduce nerve inflammation. It has also reduced pain, and added to range of motion and strength. There is support here, and support groups through the Foundation for Peripheral Neuropathy, and the Western Neuropathy Association. So, you do not have to be alone in this struggle. That has helped me, and I hope it will help you.
I am paying out of pocket too!! Balance is terrible-am going to work on that. Let's keep in touch as I am being scheduled for the implant also-pain specialist likes using Boston Scientific. My friend, who was a nurse, is really frightened for me to do it because if it fails, there can be bad consequences to live with forever; but, I don't see but two choices, live with the pain or take the risk. Are you taking gabapentin or progabalin and what mg and amount per day and when-I really am having trouble with brain fog if I take it in the morning.
I have taken 1200mg of gabapentin a day for the last 20 years. 600mg morning and 600mg at bedtime. That along with medical mj dramatically softens my pain most of the time. Like so many of us I have a long list of relatively common other symptoms but the gabapentin and mj have been very effective for me in controlling pain. It took several months to adjust to some of the unpleasant side effects when I first started taking gabapentin but I am glad I stuck with it.
Is the itch deep inside your foot, hand, etc., not on the surface? That drives me nuts! THC works for me in that I forget about the itch as soon as I can calm down and be still for awhile.
Years ago, before I had any neuropathy, I had a couple of weeks where I would awake at night with an itchy feeling INSIDE my heel. Not on the surface! It was the strangest feeling and I couldn't find any way to stop it. It would slowly go away after several minutes. We were scheduled to go away on a vacation and the first night in a hotel I did not have the "itch". It never came back! Weird. So maybe just change your environment for a week. Take a trip.
Hi @erichendrix, Mayo Clinic Connect is a forum to connect with fellow patients. If you would like to consult with Mayo Clinic physicians, you can request an appointment here: http://mayocl.in/1mtmR63
I am a fellow sufferer of non-diabetic PN. 300mg pf Pregabalin + 300mg of Oxcarbazepine helps take the edge off. Another helpful hint is doing controlled breathing in a darkened room or in bed. It helps calm the system.
Breath in deeply for count of 7 , hold it for a count of 5 and then breath out slowly. Do this multiple times until you feel the calming affect.
Lastly, I feel it very important to j=keep moving as much as you can tolerate. Otherwise, you've resigned yourself as allowing PN to rule your life.
Neuropathy has a wide spectrum, and in my experience, neurologists are the doctors best equipped to diagnose and possibly offer treatment. My Rhode Island neurologist, teaching at Brown University sought a second opinion from her neurologist colleague at Massachusetts General in Boston. They both settled on an autoimmune cause for my neuropathy, based on a number of blood tests, EMG’s, a spinal tap, and a nerve biopsy. I had to be willing to go through those tests and okay their recommendation for iVIG infusions to reduce nerve inflammation. It has also reduced pain, and added to range of motion and strength. There is support here, and support groups through the Foundation for Peripheral Neuropathy, and the Western Neuropathy Association. So, you do not have to be alone in this struggle. That has helped me, and I hope it will help you.
I have not seen a neurologist yet. Will be seeing one soon. From there I have to take a test. I believe it is a Test for nerves damages for all over my body I think. Then I have a appointment with an neurologist afterwards. Its been crazy trying to seek answers for what I am going through. No one is listening to me.
I have non diabetic polyneuropathy & the fatigue is crushing. I can do very little but sleep. Is there treatment for this relentless exhaustion? Thanks. Elden
Well at least you can sleep. Which is a big problem for me lately. Sleep for a couple of hours then I am up all night long watching TV and thinking. Cleaned my apartment no one is up at this hour. Playing games can be stressful because I am not into them. Trying to count my blessings.
I'm so sorry to hear about that. I had burning pain and numbness for 20 years due to a misdiagnosis of gout. At last a rheumatologist tested me thoroughly and said I didn't have gout and had never had it and go see a neurologist. The neurologist put me on Alpha Lipoic Acid (ALA) and in 2 weeks I started to get relief. I now take Pure Encapsulations ALA but due to input from here, I will soon be switching to R-ALA. Good thing about ALA is that near are no side effects. Hope you get some relief.
Initially 2 600mg. Be careful though of dosages. I started with a brand that said 600 ALA but when I looked at the contents, it was only 300 - the rest was fillers. Switched to Pure Encapsulations which was much more expensive but worked so much better.
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I think a neurologist can put all those symptoms together and come up with a diagnosis. Then you can work on treating each symptom. I have several of yours. For dry eyes, I use Restasis. For dry mouth, Pilocarpine prn. Those are both prescribed. My sweating is most intense on my face, neck and scalp. Every morning those parts of me are sweaty. I carry a bandanna in my car, and stopped trying to wear makeup on my face. Tegretol (carbamazepine) helps a lot with those and other neuropathy issues (palpations, itching). I recently gave up sugar and unhealthy carbs. That only lasted about 3 weeks, but I definitely noticed an improvement in how I felt. I wish I could kick the sugar and carb habit, it’s a constant struggle for me. Anyway, once you get a diagnosis, start reading, reading, reading! You have to be your own expert. Coming here is a great thing to do.
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Helpful -
Hug
7 ReactionsNeuropathy has a wide spectrum, and in my experience, neurologists are the doctors best equipped to diagnose and possibly offer treatment. My Rhode Island neurologist, teaching at Brown University sought a second opinion from her neurologist colleague at Massachusetts General in Boston. They both settled on an autoimmune cause for my neuropathy, based on a number of blood tests, EMG’s, a spinal tap, and a nerve biopsy. I had to be willing to go through those tests and okay their recommendation for iVIG infusions to reduce nerve inflammation. It has also reduced pain, and added to range of motion and strength. There is support here, and support groups through the Foundation for Peripheral Neuropathy, and the Western Neuropathy Association. So, you do not have to be alone in this struggle. That has helped me, and I hope it will help you.
-
Like -
Helpful -
Hug
8 ReactionsI have taken 1200mg of gabapentin a day for the last 20 years. 600mg morning and 600mg at bedtime. That along with medical mj dramatically softens my pain most of the time. Like so many of us I have a long list of relatively common other symptoms but the gabapentin and mj have been very effective for me in controlling pain. It took several months to adjust to some of the unpleasant side effects when I first started taking gabapentin but I am glad I stuck with it.
-
Like -
Helpful -
Hug
3 ReactionsYears ago, before I had any neuropathy, I had a couple of weeks where I would awake at night with an itchy feeling INSIDE my heel. Not on the surface! It was the strangest feeling and I couldn't find any way to stop it. It would slowly go away after several minutes. We were scheduled to go away on a vacation and the first night in a hotel I did not have the "itch". It never came back! Weird. So maybe just change your environment for a week. Take a trip.
Hi @erichendrix, Mayo Clinic Connect is a forum to connect with fellow patients. If you would like to consult with Mayo Clinic physicians, you can request an appointment here: http://mayocl.in/1mtmR63
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Helpful -
Hug
4 ReactionsI am a fellow sufferer of non-diabetic PN. 300mg pf Pregabalin + 300mg of Oxcarbazepine helps take the edge off. Another helpful hint is doing controlled breathing in a darkened room or in bed. It helps calm the system.
Breath in deeply for count of 7 , hold it for a count of 5 and then breath out slowly. Do this multiple times until you feel the calming affect.
Lastly, I feel it very important to j=keep moving as much as you can tolerate. Otherwise, you've resigned yourself as allowing PN to rule your life.
-
Like -
Helpful -
Hug
7 ReactionsI have not seen a neurologist yet. Will be seeing one soon. From there I have to take a test. I believe it is a Test for nerves damages for all over my body I think. Then I have a appointment with an neurologist afterwards. Its been crazy trying to seek answers for what I am going through. No one is listening to me.
-
Like -
Helpful -
Hug
3 ReactionsWell at least you can sleep. Which is a big problem for me lately. Sleep for a couple of hours then I am up all night long watching TV and thinking. Cleaned my apartment no one is up at this hour. Playing games can be stressful because I am not into them. Trying to count my blessings.
-
Like -
Helpful -
Hug
4 ReactionsHow many do you take a day?
Initially 2 600mg. Be careful though of dosages. I started with a brand that said 600 ALA but when I looked at the contents, it was only 300 - the rest was fillers. Switched to Pure Encapsulations which was much more expensive but worked so much better.
-
Like -
Helpful -
Hug
1 Reaction