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Old 12-06-2006, 09:35 PM #1
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dlshaffer dlshaffer is offline
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Join Date: Oct 2006
Location: Holland, Ohio (outside of Toledo)
Posts: 162
15 yr Member
dlshaffer dlshaffer is offline
Member
dlshaffer's Avatar
 
Join Date: Oct 2006
Location: Holland, Ohio (outside of Toledo)
Posts: 162
15 yr Member
Smile My PN Saga

Now that I feel more comfortable here and am posting more, I thought you all would like to know a little about me. I am a married female, 62 years of age. I was diagnosed over four years ago with unspecified neuropathy. It all started one day with the big toe on my right foot that was numb. I noticed it after work and just thought it had rubbed on my shoe. The next thing I knew, fairly quickly, was the big toe on my left foot was numb. It progressed from there to all my toes. I went to a podiatrist first and when this was beyond his realm, my family physician sent me to a neurologist. He ran a bunch of tests, but the one I remember most was the EMG and the needles. I really need to get copies of everything from this neurologist as I do not think I am going back to him. I see him once a year and he asks me questions and tests my reflexes in my knees and tells me to come back in a year. I have asked if we should be doing more tests of some kind and he never seems inclined to order any more.

I have been taking B-12 vitamin (1,000 a day, sometimes two a day) recommended by Rose (last blood test had my B-12 level at 2037) and B-complex. I think I need to start on the Omega 3 fish oil next. I also take a daily multivitamin from GNC. I was put on Neurontin for over a year, maybe two. I also take Tramadol. This is the only pain medication I have been on. I did not write information down when I changed medicines, so my dates of when I changed may be a little off. Neurontin finally stopped working and I was taking more and more of it. The numbness is always there. I then went to Tegretol which seemed to work, but I did not like the way it made me feel. I don't sleep very well, but my body seems to have adjusted to it. I sleep for 2-3 hours then awake for maybe 1-2 and then able to get back to sleep. The bottoms of my feet get so sore, but I have lost a lot of natural padding. I seem to be able to walk although not really comfortably for any great length of time. My legs do feel weak at times. I also have Baker's cyst behind both knees for which I take Piroxicam. This medicine really works as I could hardly walk before starting it. Doctor says they rarely do anything for this condition.

I retired in June 2004 after working practically all my life and have three small grandchildren, so am on the go quite a bit. In thinking back, I remember when I was very young, 8, 9, 10 maybe, that my legs were like this and my mother telling me it was just growing pains. It seems now in looking back that my legs were always kind of on the weak side. My hands seem weaker than before all this began, but not to the point where it is a problem.

I did physical therapy in November-December 2005 using the Anodyne system. This therapy did work for me. I ordered a home unit when I finished with PT on the recommendation of the therapist and with help from them, was approved by my insurance company. I received the unit the first week in January and used it faithfully every day for three months (according to directions received with unit). I then went to 2-3 times a week.

There is a website where you can read more information on this type of therapy - http://www.anodynetherapy.com/Resources.htm.

I have been on Lyrica (300mg) since spring 2006 and it has done wonders for me. I had heard of this medicine through my podiatrist and when I had my last visit with the neurologist, I fully intended to mention Lyric and forgot. I talked to my regular doctor and asked him if he could prescribe it for me as I was not returning to the neurologist. I occasionally have a slight balance problem, but do not experience any tiredness, no brain fog (had that with Neurontin), and no diarrhea. I still take the Tramadol (mainly at night) as the Lyrica does not 100% take care of the burning sensations. I also continue to use the home Anodyne therapy unit. All of these in combination have made my quality of life 75% better than it was a year ago.

I have to say I do not have pain as such, but rather a burning sensation and weird feelings in my toes at times. When I have been on my feet for any length of time, they hurt as in a soreness, but not what I call pain. With all the testing I went through, nothing was found that would cause me to have this PN condition. I have just recently been diagnosed as prediabetic, which may account for this PN although it has been over four years since this all started. I have found that when I eat things with sugar or if I get upset, my feet do feel worse.

Hope I haven’t been too boring for you!

Diana Shaffer
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