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.

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.

Jump to this post

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.

Jump to this post

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.

Jump to this post

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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