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Old 07-19-2018, 02:41 PM #1
sinjin sinjin is offline
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Default Worried and looking for help

I don't know where to begin and will apologize now for this being a long post. Back in late Winter, early Spring 2016, I began to experience what felt like a pins and needle feeling in my left foot. This would come and go. I also had the feeling of wearing a sock that wasn't there on my left leg. The 'sock' was the equivalent of a crew size one. I always wear socks that are just over my ankles. I was tested for diabetes (A1C came back at 5.5). I ended up going to a neurologist. Blood test showed that I was low in Vitamin D. Doc gave me a script for some Vitamin D and the problem went away, including the sock feeling.

Now, fast forward to January 2018. I had at least two or three instances where my left foot would feel like it was going a bit numb. This happened once outside when it was real cold. I have a vague recollection of this happening while in the house. This was resolved by bathing the foot in warm water for a bit.

We are now in July 2018. Almost two weeks ago, the feeling of the crew sock on my left leg returns. I start freaking out a bit. I now have intermittent burning/shooting pain in both feet. The pain level is about 1 on a scale to 10. There was a feeling of pins and needs in my left big toe circa three weeks ago for about five minutes.

I have hair on both feet and I know from the neurologist I saw two years ago that is a good sign. Thankfully, I have not (so far) had any numbness, tingling, problems with walking or balance, or loss of sensation. I can sense hot and cold on the feet just fine. You should have seen me last week when I was running each foot under hot/cold water to test their sensitivity. If I am wearing shoes I can feel it if I step on something such as a rock or a small pine cone. I can sense a change in surfaces (i.e. carpet or wood floor) with or without socks.

In spite of this, I have been freaking out. Last week was REALLY, REALLY bad. I have had a couple of crying fits that included dry heaves. I had an emotional breakdown last week in front of my wife. I started seeing a therapist again. Granted, it was an emergency appointment last Friday for one visit, but it seems to have helped.

This week hasn't been too bad. I have been turning to God for help and doing some meditation. I was supposed to have my yearly physical on Tuesday. My wife went for moral support. We spent most of the time explaining to my primary doctor what I've been experiencing and what I've been doing through. He didn't seem overly concerned and was trying to calm me down. His point was that we need to run tests and go from there. The waiting, as Tom Petty sang, truly is the hardest part.

I've been Googling diabetes, peripheral neuropathy, and posting in forums like this.

My fasting blood glucose last week for my physical was 99, the high end or normal. Today, A1C comes back at 5.4. My basic lipid panel results are all normal. While typing this, the TSH results came back normal. The only results I am waiting for now are the Vitamin B12 and Vitamin D. I have been taking Vitamin D supplements since May of 2016 so I doubt that will reveal anything. I eat Total cereal six days per week and, two years ago, my B12 levels were fine.

I am concerned that all these blood tests will come back normal and I'll still be left with the intermittent burning pain. I am worried about losing mobility, losing my feet, that this burning pain will get worse, that my feet will go numb, etc. I can try to quell the anxiety and fear for a bit, but it is almost ALWAYS with me.

I saw a doc last week that said what I described sounded like neuropathy. He said it's usually caused by diabetes. My A1C came back normal today and you'd think I'd be happy, but I'm not. Why? I go online and read Dr. Richard Bernstein who says that the ideal glucose level is 83. I then start to think that the ADA guidelines are wrong. Perhaps I really do have diabetes and the A1C guidelines are too high.

Doc last week gave me some Xanax to help with sleeping. I haven't used it every night because I know it's a short-term fix. Primary doc discussed with me and I've decided go back on Prozac.

I don't know if I'll get back to feeling 'normal' like I did before this started two or three weeks ago. I imagine the Vitamin B6 and D blood tests will come back normal. I then have to wait until next month to see the primary doc for the actual physical. I imagine a neuro consult will be next which probably means another two or three months of waiting beyond that. How in the hell am I going to survive with this? I have only eaten a sandwich today.

I do walk six days per week, but even the exercise does virtually nothing to take my mind off of this. I can't stop posting and Googling. Two years ago, I was able to get to a point where I was able to patiently wait for the appointment with the neurologist and wait to see what he had to say. Now, I am so full of fear I don't know what to do.

I am just looking for any help, feedback, or insight that people can provide. For what it's worth, my doctor is part of the Cleveland Clinic.
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Old 07-19-2018, 04:39 PM #2
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Hi sinjin

Welcome to NeuroTalk .

It sounds to me that you have had a very thorough clinical examination.

Quite often PN is idiopathic, meaning that it has no identifiable cause(s).

Best wishes.
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Old 07-19-2018, 05:04 PM #3
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Kiwi,

Thanks for responding. i just do not know how worried I should be. Will it get worse? Will I end up in a wheel chair? This feels like the end of the world to me.
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Old 07-19-2018, 05:23 PM #4
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are you taking vitamin D3? that is the best form to take.
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Old 07-20-2018, 06:13 AM #5
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Quote:
Originally Posted by sinjin View Post
Will it get worse?
It is very hard to say.

I have mid/moderate PN in my hands which probably is a consequence of when I used to abuse alcohol.

I stopped drinking about 10 years ago and it is now stable/slightly descreasing.
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Old 07-20-2018, 10:28 AM #6
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Default worrying will not help...

my advice is to stop freaking out. It's not helping. If your pain level is only a 1 and you still have feeling in your foot - you will most likely be just fine. Trust that your doctors will help and if they can't or you don't trust them - it's best to see a specialist in the vascular field as I have come to find out - neurologists suck at neuropathy. And whatever you do... Do not start anti-seizure meds or depression meds for neuropathy because in my experience - the side effects have actually made the condition worse.
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Old 07-20-2018, 02:31 PM #7
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Miss D,

Thanks for responding. You make a good point. I have REALLY gone overboard in my reaction to this. I've been pretty good today. My PCP actually called me today and I could sense there was a bit of disappointment in his voice that he could not help right away with this. He did recommend I go back on Prozac due to all the anxiety this is causing me. I quit it cold turkey last year. I can't rely on Xanax as it's a very short-term fix. I have anxiety and OCD issues.

I have made an appointment with a neurologist for next Friday. It's the same guy I saw two years ago.

My PCP did mention that the neuro might put me on gabapentin since I have the mild, intermittent pain. I told him that with the pain being a "1" that I have no interest in going on an anti-seizure med. I told him that the important thing to me is to find the underlying CAUSE.

I haven't felt like my 'normal' self in two or three weeks. However, this week I am doing much better. I just have to be patient. It's hard not to think about it most of the day. PCP thinks this may go away on its own. How nice that would be. I can't imagine having to live with this the rest of my life. I can't help but sometimes think this will lead to loss of mobility and I'll end up in a wheelchair.

My big problem is wanting answers and a solution NOW! Yeah, I know it could be worse, but that's not the comforting thought I'm looking (for).
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Old 07-21-2018, 11:24 AM #8
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I'm almost five years into idiopathic, full body, neuropathy. My feet and lower legs bear the brunt of it, but I have symptoms all over. I have all kinds of weird sensations in my feet and legs. Sometimes it feels like my legs are wrapped in cellophane. Virtually all the time, it feels like my socks are bunched up under my toes.

I've had every test under the sun, and nothing showed up as a potential cause. My neuro just did a nerve conduction and EMG on my legs to make sure there was no sign of large nerve/motor involvement, and there's nothing. So five years of this crap, and it's all still just sensory.

Try to calm down and not freak out...it'll make things 1000x worse. It's not a bad thing to want to find a cause, and I still try, but don't let it consume you, and certainly don't allow it take the joy out of your life.
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Old 07-23-2018, 01:23 PM #9
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Quote:
Originally Posted by sinjin View Post
Kiwi,

i just do not know how worried I should be. Will it get worse? Will I end up in a wheel chair?
That's the exact same question I posed to my neurologist when he told me "idiopathic PN" 4 years ago. The answer then and now is..... no one knows. What we do know is that symptoms seem to be linked to a vitamin deficiency and for me it's B-12.

So try and figure out what vitamin helps calm down the symptoms(they most likely will not go away) and stick with them daily. Then, go out and enjoy life....it's already short enough as it is.

Many here have it much worse that you or I and they just deal with it. We just have to play out the hand we have been dealt. The mind will block out much of the symptoms daily unless you stop doing whatever you are doing and think about them.

I'm 60, and I'll be damned if I will make myself miserable over something that really does not stop me from doing anything I want.....adapt and overcome.
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Old 07-24-2018, 03:49 PM #10
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Dish,

Thanks for the reply. I have to say I have never had anything negatively affect me for so long. This is on my mind 24/7. Right now, I can feel the minor burning/shooting pains in my right foot. Look, it's not lost on me that I need to be patient to find out what the issue is (if it can be determined). I have an appointment to see a neurologist this Friday.

I haven't eaten much the last two days. I maybe get 3-4 hours of sleep each night. I've tried listening to meditation videos on Youtube and praying, but it doesn't help long-term. I have a few pills of Xanax left to help me get to sleep, but it only lasts a few hours then I'm up. When I get up the anxiety isn't in my stomach, but I just can't go back to sleep.

I have started seeing my therapist again. It's only been one appointment so far with the second one tonight. Frankly, I'm just miserable. I can't get back to my old self and wonder if I ever will. I just cannot figure out why I am letting this bother me so much. Perhaps it's the thought of never knowing what's causing it, it getting worse, losing mobility, ending up in a wheelchair. Who knows?

I started taking Prozac again this week. I know it can take up to a month or longer for it to take effect.

I walk six days per week and the exercise doesn't do anything to quell the anxiety. The anxiety is NOT nearly as bad as it was two weeks ago. I had one crying fit this past Friday. I almost had another one just a big ago.

My wife is trying her best to help me. I don't have much of a desire to be around anyone or go anywhere. My daughter knows what's going on and has seen her father break down because of all this. I question what kind of father, husband, and man I've become.

The burning/shooting pain is very mild right now and doesn't bother me much. I know it could be worse, but, as I've mentioned before, that's no consolation prize or comforting thought.

I don't know if I'll ever break out of this.
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