Weakness in the upper and lower extremities is usually a result because of the damage to the motor nerves. The legs feel very heavy making it difficult to walk or run. It can take most of your strength to climb stairs and stumbling and tiring can also be a problem.
You can find it difficult to carry aload of groceries,open jars,turn door knobs,or even brushing your hair. Frustration can enter the picture when you find your self dropping things you thought you had a good grip on.
Numbness,tingling,and pain is a result of damaged sensory nerves. Early on you may have spontaneous sensations called paresthesias which includes numbness,tingling,pins and needles,prickling,burning,cold,pinching,sharp deep stabbing pains,and electric shocks and buzzing. They will most likely be worse at night. Unpleasant abnormal sensations brought on by touching or other stimuli are called dysesthesias. You may have anesthesia,a lessening or absence of sensation which can cause you to burn or cut yourself and not know it.
Absence of position sense is the symptom that causes you not to know where your feet are and will cause unsteadiness and lack of coordination. Chances are your way of walking will change to keep your balance,by widening your gait or dragging your feet.
The Glove and Stocking Sensation is that odd feeling that you are wearing stockings or gloves, when in fact your hands and feet are bare.
Autonomic nerve damage can cause dizziness when standing up,constipation,diarrhea,sexual dysfunction,and the thinning of the skin which results in easy bruiseing and poor healing.
My Physical Conditions
These are the physical changes that I have since the neuropathy has taken over. The most noticeable change was the muscle atrophy in the lower extremities. My feet and lower legs are real thin and nearly all the muscle tone is gone from the calves. They are extremely weak and I have no reflexes and there is very little feeling as far as sensations, like feeling the difference between hot and cold.
Both of my hands have grown weaker and have some lose of sensations as well. For some reason the left side of my body seems to be more affected than the right. The left arm is the weaker of the two.
The neuropathy moved into the trunk of my body about three months ago and has caused some problems other than the usual muscle spasams and that feeling that something is crawling on you or that your skin is moving around. I have developed some bowel problems and my bladder is alot weaker. And last but not least I have encountered sexual dysfunctions as well. With out going into details I'll let your imaginations do the work for both of us.
Psychological Conditions
Lets face up to the fact that this disease or any other can have devastating affects on any one. When this took off in late January '98 and pushed me straight down hill it did an awful number on me. I had thought the end was coming in a matter of weeks or days. I couldn't imagine what was happening to me. I was really scared for the first time in my life. I had no idea what neuropathy really was or what it was going to do too me. My mine took a flip backwards and I remembered what my family doctor had told me months earlier before I got real bad, that there was no known cure for neuropathy and it would only get worse as time went on.
But as time passed and I went through the battle field of test after test and a mountain of red tape I became more angry and stubborn about giving up hope even though I wasn't getting any ansewers as to why this was happening to me. I have taken about all of the test that you can take and it doesn't look like I will find out anything soon; if ever. Slowly but surely I am learning to deal with this new way of life. It's hard on me and the people around me. Everyone involved with me directly is affected one way or another, especially my wife Fran who has been pretty good through this whole mess. I think there were times it bothered her more than it did me. And for good reasons; because neither of us knew what was going to happen to me. I have learned to pace myself now when ever I try to do things physically around the house. Some times I forget and pay for it later with more pain and fatigue. There are alot of do's and don't's with neuropathy and we learn all about those as we go on.
The main thing that "Everyone" has to over come is "Depression". It will pull you down quicker than the disease itself. Keeping a positive attitude is the main goal. I found out after some of the anger had gone that I had to get involved with this, so I started researching neuropathy and all other neurological diseases. I did this for the simple reason the doctors were not giving me the ansewers that I needed. I still don't know everything I want to know about this but aleast I have ruled out alot of questions I had. The research has also help me get my mind off of the pain and think about other things like this web page for instance. Keeping a positive attitude and a sense of humor about this is the only thing I can come up with until something better comes along.God Bless and Good Luck to all. "LIFE DOES GO ON"
LATEST UP DATE
This is an up date since I started my page several weeks ago. I have found a new neurologists and he is very good. This is the fourth one that I have seen so it is very important to get more than one opinion. I am now on a new medication called Neurontin that is helping me with the pain and burning in my feet. I take 3 pills that are 300mg 3 x aday a total of 2700mg and it is working pretty good so far with very little side effects. When I get my results back from a nerve biopsy he will be able to make a better diagnosis. Right now he thinks I may have a genetic disease that is just now showing up in me because of all the new virus's and all the chemicals that we are in contact with in this new modern age that we live in.
I have worked hard with the physical therapy and exercise by doing things around the house just to keep the muscles working and the blood flowing because of the poor circulation that I have but I still am looking at the possibility of a leg brace because of the extreme atrophy that I have. The neuropathy is still bothering my upper body from time to time and there are more problems with blurred vision in my left eye and loss of hearing in my left ear. For some reason the left side of me is affected more than the right which tells me that there is another disease here other than neuropathy. I will keep adding more information to my page as I get it so maybe people who come here will get some help from all of this as neuropathy or any other disease can be very frightening because of the unknown. There alot of things that can happen to us because of these different diseases so they can be very embarrassing to talk about but I am a very down to earth person to talk too so please feel free to send me comments or questions about your problems and I'll do my best to help you anyway that I possibly can. I will up date my page again as soon as I get more in put from my neurologist.
This is another up date since my last entry. After more research I have found out that my Neuropathy is Genetic from my mothers side of the family. She has had signs of it since 1990 but thought it was only circulation and never persued it until I came down with it. After I was put on disability and she learned more about my problems then she began to tell me that she was having the same things like the burning and stinging sensations in her feet and that her legs were getting weaker. I finally got her to go too my Neurologist and have the EMG to confirm that it was Neuropathy. Hers is starting to progress further up the lower legs like mine but at a slower rate. The Neurologist has put her on Neurontin and started her with Physical Therapy for her lower legs.
Since then I found out that my oldest son is having a lot of the same symptoms as I did when mine first started a few years ago. The next thing we have to do is get him to a Neurologist for the test to find out if he has Neuropathy which will be a chore because he is stubborn and doesn't want too hear that he has it which is understandable. The Neurologist wants to do a blood work up on the three of us to see if he can find the mutune gene that could be causing this. When ever this is task is completed I will give everyone the out come of the test. Until then I wish everyone Good Luck and thank you all for reading my page.
January 20001-This is a new up date on my Neuropathy. It has been awhile since I have put anything new on my page and I appologize for that but there wasn't really anything that happened that I could write about.
This past year or so I found out that sun bathing has really helped me tolerate the pain and I could not get enough of it. I really felt good and the pain seemed to deminish to where if I missed a dose of my Neurontin which is up to 3600 mg. per day now it didn't bother me nearly as much. It's strange because the first year I was off work I could not take the heat and the cold weather felt the best to me. I got to the point this past summer I sun bathed naked and I know that sounds crazy and strange but I felt really good; not normal by any means but really good. My wife thought I was loosing it because of the sun bathing but it was something I had to do.
But there is a down side to every story and mine is no different. The neuropathy has spread too my hands and arms which has caused me to loose more strength and the ability to open jars or even doors at times so it's back to Physical Therapy again. Not only for my hand and arms but my lower legs have lost more muscle mass and again there are days I can't walk too well. I am still able to drive but I find days I can't feel the pedals as good as I should.
Last September I had a upper and lower G.I. test down and no cancer or ulcers where found any where in my digestive tract. You are probably wondering why did I have those test. Well for nearly six months or maybe it was longer I was having problems swallowing especially meat. I choked several times I was not sure if I was going to make it through the spells. I finally told my family doctor and he set up an appointment with the specialist that did the test. He used three different tubes to expand my esophogus back too nearly normal. It had shrank down to more than half it's normal size right where my Larynex or Adams Apple is located. It was sore for more than two months after the procedure but at least now I don't choke anymore. My Neurologist informed me that he had heard of other cases like mine and he strongly beleives it was the Neuropathy that caused my problem. I have no other problems that could affect my ability too swallow so I have to go along with his theroy. I also remember talking to a young lady from Vancouver about two years ago that had the same problem plus she was having problems digesting her food so this terrible condition can affect us all in different and frightening ways.
I hope and pray to god that someone will find a cure and or a better treatment for everyone who suffers from Neuropathy of any kind. I wish each and everyone of you a very happy and pain free New Years. God Bless!
March 1 2002 Update. I have something that has helped me and I only hope it will help others also. I joined a Fitness Forever Club at a local therapy unit where I live in northern New York. I wasn't sure it would do that much good but after 3 months of arobic exercises and useing the weight machine I have been able to lower my dosage of Neurontin in the morning and the mid-day to 800 mg instead of the 1200 mg which I still take at bed time because that is when the pain is still the worst. The workouts have really made me feel stronger plus I feel better about myself as a person again. The Neurontin makes you feel tired and often dizzy or off balance so those symptoms are alot less because of the lower dosages. I don't expect to enter any marathons or strong man contests but if I can regain some of what I lost I will still be going forward and not backward like I was. Take care and remember to love who you are not what you are. Until next time God Bless!
Links to other sites on the Web
Neutrition,Diabetes and Social Security Benefits
Forums and Chat Rooms on Neurological Disceases
Social Security and the Year 2000
Neuropathy Support Group
A Beautiful Story About Wolves
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© 1997 johnfran@northweb.com
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