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#1 | ||
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Junior Member
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Update Time:
Its been 3 weeks so I wanted to make sure I posted something so I can continue to track my progress, especially with rapid changes occurring in regards to my symptoms. First thing is first. After pleading with my Neurologist to try Gabapentin since the Nortriptyline wasn't giving me relief, he agreed and I started at 300mg x3 per day. Ten days later I contacted my doctor and told him I was going downhill fast with pain he told me to up my dose to 600mg x3 per day which is where I have been the past 3 days. As far as symptoms go, things are changing, waxing, and waning. Off the top of my head i recalled this all started with deep aches in my heels and arches with burning on the top of my. The arch pain is mostly gone, the heel pain has subsided a little, and the burning has turned to more of a freezing sensation. My feet feel really cold at times stimulated by things such as socks of all things. The things is my feet aren't cold to the touch. The skin on my foot soles has become increasingly hypersensitive at times as if they have been rug burned. Shoes and socks have become unbearable as a result, and being barefoot feels best. The toes on my right foot have become sore and feels like I'm walking on shards of glass at times. Thats fun. Also the rubbing of pressure points of my shoes are real bothersome to my right foot. I have a Nerve Conduction Study in 2 weeks. Depending on how that goes all request further blood testing since my neurologist seems to think we've hit all the important ones. (wrong) I guess at this point I'm still leaning towards a toxic or autoimmune cause although based on my symptoms and progression there are no specific causes that jump out. I still won't rule out alcohol even with the abnormal progression, but it's the only other thing that I can attribute the neuropathy to. I bought an exercise bike to get the blood flowing since walking more than a few minutes at a times is out of the question. I deeply hope that the change in symptoms is a good sign, because it's extremely scary and overwhelming when a new symptom pops up. I'm doing what I can to turn this around, I can only hope for the best at this point. -Left foot symptoms 131 days -Right foot symptoms 84 days -Days on Nortryptiline 59 days (30mg) -Days on Supplements 53 days -Days on Gapapentin 13 days (600x3) -Days sober 36 |
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"Thanks for this!" says: | Sandylyn (05-26-2014) |
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#2 | |||
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Wisest Elder Ever
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The bike may make problems worse for you. I found that bikes, both recumbant and vertical and the calf machines at the gym
made my PN much worse or invoked a flare. So you may find the same....please start at short intervals, like 5-10 minutes only with little resistance. If you have any compression anywhere, movement of the ankle may increase it. Also I forgot ....did you have heavy metal screening? Accidental ingestion of heavy metals can cause a rapid PN. Arsenic is the most common, but mercury and/or cadmium are also potential culprits.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#3 | ||
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Junior Member
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Quote:
I still haven't been tested for heavy metals, but after my nerve conduction study I'll be pushing for further testing based on the results. Me and the neurologist are still working things out and building trust. He's been very responsive to my emails but obviously isnt as interested in my case as I am. I'm my own advocate at this point. |
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"Thanks for this!" says: | hopeful (04-07-2014) |
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#4 | ||
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Member
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The best thing we can all do for ourselves is to be our own advocates. Your right our doctors have to divide themselves between many patients. We only have to research info for ourselves.
I've taken info from people on this site to my doctor and think I've given him some new info. Thank goodness, he is receptive! Hopeful |
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"Thanks for this!" says: | beatle (04-07-2014) |
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#5 | ||
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Junior Member
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Thought of the day.
I can't think of any other injury, illness, or disease in which you can have the best day and worst day of the month all in the same day. This disease is truly a mind trip. I'll use this bit of insight to get me through the rough patches. I'm sure everybody who's been through this already knows that sometimes you just have to get through the bad days (flares) and tomorrow will be brighter. On the opposite side of the spectrum, we can't be discouraged when tomorrow is worse than today. Just one of the many lessons PN has taught me. I hope one day I can get through this and use what I have learned to improve myself as a person. |
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"Thanks for this!" says: | CeCe55 (04-13-2014), echoes long ago (04-14-2014), Icehouse (04-13-2014), jenng (04-19-2014), Joe Duffer (04-13-2014), mrsD (04-13-2014), yupings (05-06-2014) |
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#6 | ||
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Junior Member
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I am in total agreement with your thoughts for the day IH8PN. Very well said!
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"Thanks for this!" says: | mrsD (04-13-2014) |
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#7 | ||
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Junior Member
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2 weeks since my last update and there is quite a bit of information to add. So much so that I hope I'm not leaving anything out.
First and foremost the most important information to report is the results from my nerve conduction study. Drum roll please..... The results showed the observable nerves in my legs were normal, which I pretty much expected with small fiber symptoms. It was nice to rule out large fiber involvement and maybe something more ominous. But, wait it gets better..... The study also showed that I have Ulnar Neuropathy! (elbow) That's right, I have nerve damage where I least expected it and have very little discomfort. ![]() So my doctor emailed me the results and at the end of the email he mentioned that if I was interested in a skin biopsy he would talk to a colleague about having one done. I was very impressed that he offered a skin biopsy without me having to ask. Not only that, but the fact he had to ask a colleague about it showed he was willing to go out of his way to have one done! This is the first time since I developed this awful pain that a doctor has impressed me with their interest in helping me. Maybe I'm just used to doctors shrugging me off so far and I'm easily inpressed. ![]() As far as my physical condition there are also changes to report. I'll start with the good. The burning, freezing, and skin sensitivity are noticeable less. Far from gone but I'll take any relief I can get. Not sure if it's the medication, vitamins, healing, or a combination of all 3. I've also noticed I'm getting some normal feel in my feet back on occasion. The past few months the sensations in my feet were so altered that even carpet felt like walking on steel wool. I've noticed the softness of the carpet coming back in short bursts. I was also able to do a doctors appointment, shopping, and a few errands around the house which required me to be on my feet for extended periods of time. Although uncomfortable and requiring the use of sandals, it was something I couldn't have accomplished a few weeks back. I definitely payed for it at the end of the day with sore feet, but it was mentally rewarding to accomplish physical tasks. I also can't remember the last time I felt an electric shock in my body! Unfortunately I still get altered sensations, aching feet, and the feeling of walking of rocks which vary in intensity day to day and with different foot wear. I can't say for sure any of those symptoms have lessened, if so it's not by much. Definitely not worse, but maybe I'm adapting better? I've even felt a little better at work which is the one time I don't have control over how much I exert myself, which is physically and mentally difficult at times. I'm no longer convinced alcohol is the cause of my neuropathy symptoms. Maybe it played a part, and I'm just happy I have been able to seriously cut back on my drinking. I've learned that health is important and fragile. Life is also short. With that being said I've decided I'm going to allow myself to drink socially and in serious moderation. I had a few beers last weekend and don't feel guilty because I haven't touched it since. I proved to myself that I can show restraint with alcohol and have learned just how toxic it can be to bodily systems. (plus even in small amounts it really helps with the pain). I'm still trying to eat healthier, get more exercise, and give my body a chance to heal and thrive. Obviously I will no longer be counting sober days. -146 days since Left foot symptoms -99 days since right foot symptoms -74 days on Nortiptyline (30mg) -68 days on Supplements -28 days on gabapentin (600mg x 3) |
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"Thanks for this!" says: | mrsD (04-20-2014) |
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