Seeking help, information, support...

Posted by sinjin @sinjin, Aug 10, 2018

I am going to apologize now for how long this is going to be. Back in late Winter, early Spring 2016, I developed a pins and needles feeling in my feet. I also felt like I was wearing a sock on my left foot that was not there. The pins and needle feeling would come and go. It caused me more anxiety than anything. I saw a neurologist in May 2016 and it was discovered I had a Vitamin D deficiency. I was given a script for Vit D, take a supplement every day, and that fixed the problem.

We now jump ahead to January 2018. I had at at least two occasions where my left foot kinda felt numb. One time I was outside and it was VERY cold. I soaked the foot in warm water and fixed the problem. This happened again while I was INSIDE the house. Again, I put my left foot in some warm water and it was back to normal. I didn't give it much thought.

I was taking a shower about six weeks ago and fell out of the tub. Now, I don't remember if I hit the side of the tub and THEN fell on the floor of I fell right on the floor. In any case, I landed on my rear end outside the tub. I did NOT hit my head. The fall was kinda hard. I had no back or leg pain right after the fall or since then. The only thing I had worth noting was a pins and needle feeling in one of my left fingers for a few minutes a day or two after the fall.

We now move to three weeks after the fall. I have been having these intermittent burning sensation/electrical shocks in my feet. The pain level is about a "1." It has NOT affected balance, walking, or strength. However, it has done a number on me mentally. I am so freaked out by this. The anxiety has been so bad that I've lost about 20 pounds from not eating. I haven't slept well. The sensations are not constant and, thankfully so far, do not occur at night.

I have done a TON of research online about diabetes and neuropathy. My PCP ran a basic metabolic panel for my yearly physical last month. Glucose came back at 99 (the extreme high end of normal). I also had an A1c done and it came back at 5.4.

Vitamin D and B12 came back normal. TSH was normal. CBD Diff all came back normal except for ABS Mono. The high range of normal is .86. Mine came back at .9. The doc was not concerned.

Last week, I go to see a neurologist. It's the same guy I saw back in 2016. He put me through a basic neuro test. The one thing that I should note is that there was a test where he poked my fingers with a pin. I could REALLY feel how sharp it was. However, as he went down my legs, I could feel the pin, but it felt blunt, for the most part, below the knees on both legs.

I want to take a moment right now to say that my feet can feel the differences in surface texture (e.g. carpet vs. wood floor) and can sense temperature differences just fine. If I am walking outside and step on, say, a pine cone, I can feel it through my shoe.

Last week, the neuro ordered these tests:

ANA by IFA Screen (Negative)

Folate Serum (Normal)

Vit B6 (Normal)

Sed Rate (Normal)

Consequently, he has now ordered his 2nd tier of tests:

Complete Metabolic Panel

ANTI ENA ID

ANTI SSA BLD

ANTI SSB BLD

HEP REMOTE PANEL

HEAVY METALS SCREEn

I have not yet taken those blood tests. I had a new development today where my right arm felt 'warm.' That is the only way I can describe it. I had this same sensation in the right for part of a day about two or three weeks ago. I also have some pain in my middle back a little below my neck.

I don't think that either my PCP or Neuro believe that the fall in the tub is in any way related to what's going on.

From last Saturday through Wednesday of this week I didn't have the burning pain/electrical sensations at all. I was back to my normal self with no anxiety. Then, yesterday, they come back. Again, it's a "1" on the pain scale, if that. It's been off and on the last few hours and now I don't know what to think. Now, the anxiety/worry is back and it's driving me crazy.

Guess what I'm looking for is some feedback or, perhaps, just support, or thoughts on this whole situation. Thanks.

"Full Catastrophe Living" is on my nightstand so I can delve into it whenever I need a bit of a lift. Nice to see others appreciated the messages.

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@artscaping

@sinjin – regarding your electrical/burning sensations. I am wondering if these are not the same as what some call the "zappers" or "whooshes". Mine began at about the time of the SFN diagnosis and usually started between 4 and 5 a.m. My neurologist increased the nighttime gabapentin and eliminated the morning dosage. Now I just have the burning in my abdomen and torso upon awakening with no "zappers". I also received what turned out to be great advice from my yoga, meditation and mindfulness teacher. Notice, be aware, observe and welcome the sensation even if somewhat painful. Do not fight it. Don't even move. Just let the sensation wash over or within your body. It will do its thing and then it will dissipate and go away much more quickly. She was right. I am no longer frightened or dismayed by the burning. I just say, "good morning pain" or "welcome burn" and wait patiently for it to disappear. It leaves pretty quickly and I seldom, if ever, have any more episodes during the day.

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@marinelastef – and all those who find meditation difficult to accomplish and therefore miss the benefit of the practice. My first attempt at meditation left me uncomfortable and I bailed….just walked out. A wonderful person followed me and helped me understand. To meditate, all you really need to do is focus on one item so well that random thoughts stay away. You might choose to focus on a fan in motion, or, as I do, focus on the area above my upper lip. First I notice and become aware of the cool air entering my nostrils and then I feel the warm air exiting my nostrils. Sometimes my mind wanders away, everyone's does. So I pull it back and begin again. Sometimes I count the breathing cycles to help prevent the wandering mind. Meditation sets the stage for mindfulness and gives us the ability to be present in the moment. Please try again. There are many apps online. I chose "Calm". The daily calm begins with meditation and ends with a message. Today it was "vulnerability." There are also Master Classes with multiple chapters in a series on timely issues. I think you can try it free at calm.com. This app received the Apple Award in 2017 for being the best meditation app. Let me know what works. And just an FYI…I am a female. Christie has been shortened to Chris over the years.

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Thank you for the recommendation regarding the book. I will certainly check it out.

The burning/electrical sensations have returned and I've been dealing with it pretty well for the most part. When this hit last month I was not eating, having trouble sleeping, getting dry heaves, and an occasional crying fit. Frankly, I became physically and emotionally drained with putting myself through this. I have finally accepted the fact that I have to deal with it, be patient, and wait to see what the doctor(s) say(s). Sure, the anxiety still comes up at times, but I'm doing my best to control it.

This is a place I can come to and not drive myself crazy with what I read. I was doing all sorts of reading online about neuropathy and diabetes. Goodness. All the questions that kept coming into my mind:

1) Am I going to lose feeling in my feet?

2) Will I end up in a wheelchair?

3) Will I eventually not be able to walk?

4) Will this get worse?

5) Will I end up traveling to different doctors and hospitals around the country trying to get an answer? My doctors are part of the Cleveland Clinic so I hope not, but…

Truth is, nobody knows. I had to stop worrying about all the possibilities. The warning about Dr. Google was one that I did not heed.

I am appreciative of the feedback and support that I've received from everyone. I've been given some new things to try to deal with my worry. Thank you all!

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@sinjin

Thank you for the recommendation regarding the book. I will certainly check it out.

The burning/electrical sensations have returned and I've been dealing with it pretty well for the most part. When this hit last month I was not eating, having trouble sleeping, getting dry heaves, and an occasional crying fit. Frankly, I became physically and emotionally drained with putting myself through this. I have finally accepted the fact that I have to deal with it, be patient, and wait to see what the doctor(s) say(s). Sure, the anxiety still comes up at times, but I'm doing my best to control it.

This is a place I can come to and not drive myself crazy with what I read. I was doing all sorts of reading online about neuropathy and diabetes. Goodness. All the questions that kept coming into my mind:

1) Am I going to lose feeling in my feet?

2) Will I end up in a wheelchair?

3) Will I eventually not be able to walk?

4) Will this get worse?

5) Will I end up traveling to different doctors and hospitals around the country trying to get an answer? My doctors are part of the Cleveland Clinic so I hope not, but…

Truth is, nobody knows. I had to stop worrying about all the possibilities. The warning about Dr. Google was one that I did not heed.

I am appreciative of the feedback and support that I've received from everyone. I've been given some new things to try to deal with my worry. Thank you all!

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@sinjin All of your questions are legitimate for those of us who cope with this condition. I spent a lot of time trying to find answers to similar questions. I was sure that my head and brain were just deteriorating. I was frightened. My neurologist scheduled an MRI and found nothing unusual. I remembered that I had fallen and cracked my head on the bathroom floor 3 years ago and wondered if there was evidence of fall damage. No there wasn't. I had spent three days in a sling at the hospital after falling another time and receiving a major concussion. Could they see anything on the MRI? No, nothing. And then I started realizing that the head tingles and shock waves were directly related to what I was thinking in answer to those darn wonderments. In other words, the symptoms were anxiety produced. And so….I set out to stop becoming so anxious and to learn to control the anxiety as soon as it starts. That led me to Medical Marijuana and relief. I still get them in my head but I now know why and I can do whatever it takes to reduce the anxiety. Sometimes that means saying "no" to doing certain things and with certain people. Sometimes that means meditating immediately wherever I happen to be. The questions are still there ….they just don't consume me. Good wishes to you for finding relief.

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@artscaping,

Thank you for the reply. There are times when I still get worried/anxious when I get the sensations in my feet, but it's no where near as bad as it was, say, even two weeks ago. I imagine going back on Prozac and seeing the therapist have helped. Thankfully, my appetite is back and I am sleeping a bit better. I do have Xanax to help with sleep, but try to avoid it. It only lasts a few hours and, as I've mentioned before, my doctor said that is not a long-term solution.

The sensations are intermittent and sometimes do not happen for a few hours. The pain hasn't changed for the most part. I am very thankful to be able to sleep at night. Yes, I do worry it might get worse, but it doesn't consume me as it did not too long ago. Lately, I've been able to avoid excessive worry causing knots in my stomach, loss of appetite, lost sleep, occasional dry heaves and crying fits. I was a mess.

I've done all kinds of reading online about neuropathy and the different treatments. There is SOOOOOOO much information to consume. It's not easy trying to figure out what would work for an individual. Frankly, I wouldn't want my first choice to be an anti-seizure med like Gabapentin if the pain gets worse. I'd ask my neuro what other avenues we could explore.

I've seen the Youtube videos of chiropractors that claim to have a great success rate with treating neuropathy. I saw one video from a doctor in Wisconsin touting how effective stem cell treatment can be. However, I try to keep my faith in the doctors at the Cleveland Clinic. Will I end up having to go to Mayo or another facility out of state? Who knows?

There are more tests to run which, of course, means being patient as the doctor(s) try (tries) to figure out what's wrong. I try to focus on other things. Yes, I worry that I'll get a pins/needles feeling, numbness, or other symptoms and, if that happens, that it might spread. Just trying to stay positive because what we believe/think in our minds has a great impact on us.

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You did mention falling, and you might want to consider a physical therapy evaluation to see if anything is out of place in your body that might be contributing to your pain. Does your doctor think that your medications could have any side effects contributing to your symptoms? From my own personal experience, the best way for me to confront fear was to embrace it and learn why I was afraid. You are doing the right things to be thorough in your quest. We can't control what we don't understand, and education goes a long way toward calming fear of the unknown. Understand that it's a journey, and even baby steps are progress toward your goal. Keeping a journal would help your doctors understand how your symptoms change over time and if they are related to any of your activities. As humans, we are wired so that stressful things get our attention first, and just realizing this can help you let go of it. Fear also increases pain. Mayo has 2 great books (which I bought for myself) by Dr. Soot that might help, and I found them fascinating. The "Mayo Clinic Guide to Stress Free Living", and the "Mayo Clinic Handbook for Happiness." I had worked out my own personal routines to confront my own fears, and reading these books explained why that worked for me. I was a surgical patient and I learned how to calmly accept what I needed to do to help my doctors help me. I hope this helps you in your journey.

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@jenniferhunter

You did mention falling, and you might want to consider a physical therapy evaluation to see if anything is out of place in your body that might be contributing to your pain. Does your doctor think that your medications could have any side effects contributing to your symptoms? From my own personal experience, the best way for me to confront fear was to embrace it and learn why I was afraid. You are doing the right things to be thorough in your quest. We can't control what we don't understand, and education goes a long way toward calming fear of the unknown. Understand that it's a journey, and even baby steps are progress toward your goal. Keeping a journal would help your doctors understand how your symptoms change over time and if they are related to any of your activities. As humans, we are wired so that stressful things get our attention first, and just realizing this can help you let go of it. Fear also increases pain. Mayo has 2 great books (which I bought for myself) by Dr. Soot that might help, and I found them fascinating. The "Mayo Clinic Guide to Stress Free Living", and the "Mayo Clinic Handbook for Happiness." I had worked out my own personal routines to confront my own fears, and reading these books explained why that worked for me. I was a surgical patient and I learned how to calmly accept what I needed to do to help my doctors help me. I hope this helps you in your journey.

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Hello @jenniferhunter, I would like to Welcome you to Connect and thank you for sharing what works for you. This is what is great about Connect. I also found Dr. Amit Sood's website really helpful. He has a lot of helpful videos that explain how our brain deals with emotions and stress.

https://www.resilientoption.com/

John

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@jenniferhunter

You did mention falling, and you might want to consider a physical therapy evaluation to see if anything is out of place in your body that might be contributing to your pain. Does your doctor think that your medications could have any side effects contributing to your symptoms? From my own personal experience, the best way for me to confront fear was to embrace it and learn why I was afraid. You are doing the right things to be thorough in your quest. We can't control what we don't understand, and education goes a long way toward calming fear of the unknown. Understand that it's a journey, and even baby steps are progress toward your goal. Keeping a journal would help your doctors understand how your symptoms change over time and if they are related to any of your activities. As humans, we are wired so that stressful things get our attention first, and just realizing this can help you let go of it. Fear also increases pain. Mayo has 2 great books (which I bought for myself) by Dr. Soot that might help, and I found them fascinating. The "Mayo Clinic Guide to Stress Free Living", and the "Mayo Clinic Handbook for Happiness." I had worked out my own personal routines to confront my own fears, and reading these books explained why that worked for me. I was a surgical patient and I learned how to calmly accept what I needed to do to help my doctors help me. I hope this helps you in your journey.

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@jenniferhunter

Thank you for taking the time to reply. I don't think any of my meds are causing the symptoms. At the time the sensations started I was taking 50mg of atenolol twice a day and 4,000 units of Vitamin D. I've gone back on Prozac since then to help with the worry/anxiety.

You mentioned that education goes a long way toward calming fear of the unknown. As I've mentioned previously, I did a lot of reading online about neuropathy and diabetes to my detriment. I had a fasting blood glucose AND A1c tests done. However, I then read online that those two tests can be normal and that an oral glucose tolerance test could, in fact, show a person has pre-diabetes or diabetes. I expressed my concerns to the neuro about it and, at this time, he does not see enough information to be concerned about diabetes. This was an example of how I went overboard with this whole thing resulting in more anxiety.

When the sensations come I feel the anxiety build and try to keep it at bay. I have no interest in going back to the way things were. Thank you for mentioning the books as well.

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I do pray read the Bible for help/encouragement. I'm not trying to starting a debate about Christianity or religion, but simply wanted to mention it.

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@jenniferhunter

You did mention falling, and you might want to consider a physical therapy evaluation to see if anything is out of place in your body that might be contributing to your pain. Does your doctor think that your medications could have any side effects contributing to your symptoms? From my own personal experience, the best way for me to confront fear was to embrace it and learn why I was afraid. You are doing the right things to be thorough in your quest. We can't control what we don't understand, and education goes a long way toward calming fear of the unknown. Understand that it's a journey, and even baby steps are progress toward your goal. Keeping a journal would help your doctors understand how your symptoms change over time and if they are related to any of your activities. As humans, we are wired so that stressful things get our attention first, and just realizing this can help you let go of it. Fear also increases pain. Mayo has 2 great books (which I bought for myself) by Dr. Soot that might help, and I found them fascinating. The "Mayo Clinic Guide to Stress Free Living", and the "Mayo Clinic Handbook for Happiness." I had worked out my own personal routines to confront my own fears, and reading these books explained why that worked for me. I was a surgical patient and I learned how to calmly accept what I needed to do to help my doctors help me. I hope this helps you in your journey.

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Thanks for your reply. You're right not to diagnose yourself from information on the internet and it's easy to assume the worse and escalate something into fear. I've done that before too. Education guided by your doctors is what I advocate for. I do have an advantage with that in that I have a biology degree and I can understand medical literature and studies that I've read. I started with looking up things that were on my medical reports. I have had a few circumstances where doctors missed my correct diagnosis, and I was able to figure things out long before they did, but I went for other opinions until a doctor got it right. Giving the doctor the right information and correct symptoms sure helps along with asking the right questions. That being said, make sure questions are questions about your symptoms. You can say you suspect you have whatever, but that is your doctor's job to make the diagnosis. I have also gained knowledge working in a research lab for a neuro-anatomist and through my own experience both as a patient and in my college lab experiences.

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@jenniferhunter

You did mention falling, and you might want to consider a physical therapy evaluation to see if anything is out of place in your body that might be contributing to your pain. Does your doctor think that your medications could have any side effects contributing to your symptoms? From my own personal experience, the best way for me to confront fear was to embrace it and learn why I was afraid. You are doing the right things to be thorough in your quest. We can't control what we don't understand, and education goes a long way toward calming fear of the unknown. Understand that it's a journey, and even baby steps are progress toward your goal. Keeping a journal would help your doctors understand how your symptoms change over time and if they are related to any of your activities. As humans, we are wired so that stressful things get our attention first, and just realizing this can help you let go of it. Fear also increases pain. Mayo has 2 great books (which I bought for myself) by Dr. Soot that might help, and I found them fascinating. The "Mayo Clinic Guide to Stress Free Living", and the "Mayo Clinic Handbook for Happiness." I had worked out my own personal routines to confront my own fears, and reading these books explained why that worked for me. I was a surgical patient and I learned how to calmly accept what I needed to do to help my doctors help me. I hope this helps you in your journey.

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Thanks, John. I didn't know about Dr. Soot's website. I like the short informative videos that make you re-think your approach.

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@jenniferhunter

That is some very helpful knowledge and experience to have. While I don't have that level of experience, my father-in-law (pathologist), sister-in-law (pediatrician), and brother-in-law (OB) are all doctors. The interesting thing is the pediatrician is married to the OB and they're expecting their first child later this year!

You made a very good point in that it's the doctor's job to make the diagnosis. I've driven myself crazy with making my own. I just try to stay in a positive state of mind and not pay too much attention to what's going on with my feet.

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I was diagnosed with Hereditary Inflammatory Neuropathy, which is a type of peripheral neuropathy. Took 3 years to get diagnosed as it is a slow progressive disease and my tests did not start to abnormalities right away. It took a lot of tests, consults, and medications to figure out what works best for me. I will either do IV prednisone (methylprednisolone) or oral prednisone when I have a "flare up" which happens with illness/allergies/etc. That combined with pain meds, Effexor, and (Xanax- only while on prednisone). I will get numbness, weakness, and pain at first and then as my nerves start to heal in my hands and feet, that is when I get the tingling sensation. Takes 1-2 months to heal and it probably happens every few months or so. I have also found that sleep is the best medicine. I take two 50 mg of Trazadone and 20 mg of melatonin and I go to bed and get up about the same time every day. Even though I have a progressive disease and am losing strength on my left side and now is starting my right side, I still work full time and I am raising 3 daughters. The Effexor has really helped my attitude and helped with pain. I have tried many other medications but the treatment plan I have now works best for me. I am very blessed to have a neurologist that really listens and works with me.

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@kristine522

I was diagnosed with Hereditary Inflammatory Neuropathy, which is a type of peripheral neuropathy. Took 3 years to get diagnosed as it is a slow progressive disease and my tests did not start to abnormalities right away. It took a lot of tests, consults, and medications to figure out what works best for me. I will either do IV prednisone (methylprednisolone) or oral prednisone when I have a "flare up" which happens with illness/allergies/etc. That combined with pain meds, Effexor, and (Xanax- only while on prednisone). I will get numbness, weakness, and pain at first and then as my nerves start to heal in my hands and feet, that is when I get the tingling sensation. Takes 1-2 months to heal and it probably happens every few months or so. I have also found that sleep is the best medicine. I take two 50 mg of Trazadone and 20 mg of melatonin and I go to bed and get up about the same time every day. Even though I have a progressive disease and am losing strength on my left side and now is starting my right side, I still work full time and I am raising 3 daughters. The Effexor has really helped my attitude and helped with pain. I have tried many other medications but the treatment plan I have now works best for me. I am very blessed to have a neurologist that really listens and works with me.

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Hello @kristine522, welcome to Connect. Thank you for sharing the treatment information that works for you. It's great to have a neurologist or doctor that will work with you and listen to your concerns and how you are feeling. Sleep really does wonders to help rejuvenate and get you ready for the next day.

Has your neurologist offered any suggestion on what might help you build your strength up on your left side and the right side?

Thanks again for sharing what works for you.

John

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