Originally Posted by Patricialyn

Hello again,

Thank you so much for all of your supportive as well as informative replies back to me. I really appreciate you folks taking the time to read my post, and getting back to me so quickly.

I have to admit, I have not taken control, and have not done some things that could possibly of helped my symptoms, such as trying different medications, taking supplements, having more tests done, when I had the excellent insurance. What was I thinking? I wanted to trust my neuro, since she is the one with the degree, and is suppose to have such great knowledge of neurological disorders!, but even her along with all the doctors were more easily ready to just write out a script, and not find out the REAL cause of my PN.

Possibly I would have been more easily excepting of taking a medication, or treatment plan for my PN, if I knew the cause, instead of so many doctors seeming to be guessing.

I have a unrealistic fear of medications as it is, so that in addition to the wondering if taking a medication would just mask the symptoms, and the real cause of my PN will never be found, or get worse is always on my mind.

I pray that miraculously my symptoms will just go away, hey maybe right? My daughter and her husband are both ministers, that should pull me some weight.

The logic side of me knows now that is not going to happen, unless some action is taken and by me, and the realization of it is that my PN is slowly getting worse, not better.

I worry intensely about having this disorder, now it seems one day turned into two, the days to weeks, and now years, and I still feel like I have no control.

I care for my elderly mother, she lives 22 miles from me, and now a SIL that has a brain tumor as well, not feeling good myself. Others don't really know the extent of my worry, and my pain that I have from this disorder, only my husband, and even he really is not aware of the real agony I am in most of the time. Uggg sorry about the complaining.

With financial issues a major concern presently due to our limited health insurance, I feel frozen in a sea of ice, as far as getting further tests, which angers me so. However that is not an excuse for not doing what I can do, so why am I so stuck, and doing nothing?I need a plan so I don't feel so hopeless, and also I need to feel better.

Excuse me please, for not replying back at this time to some of you that asked specific questions, however I will do so in my next post, I want to go back and review your posts again.

Thanks again

Patty

Originally Posted by Patricialyn

Hello,

I am a 52 year old female that was diagnosed with PN, approx 4 years ago.

My medical history in part is as follows:

Approx 20 years ago I became extremely ill, flu like symptoms, fatigue, anxious, heart palpitations, hair became thin, skin lost pigment, and a strange arthritis appeared in my hands and feet. In addition I went through early menopause at age 45. (might not even be related to my PN.)

After many tests, and many doctors the diagnosis was a idiopathic immune disorder. Doctors came to this conclusion since my ANA was always normal , however doctors knew I had something, but just what disorder I had, baffled doctors, so that is the diagnose I ended up with. Some doctors brushed me off as just being nervous. errr rrrrrrr

Blood work I had that was abnormal, was a high sed rate. It would go way up, then come down to normal.

However, my severe symptoms waxed and whined for about two years, then amazingly settled down, and I gained some of my energy back, then the arthritis left, and I felt good enough to carry on.

My 62 year old sister has Lupus, however she has abnormal ANA, and my 84 year old mother is a brittle diabetic, her first symptoms came on abruptly at age 70, late in her life, odd but true. She has good weight, and takes good care of herself, eats well, and due to this is well, she has no PN.

My 64 year old Aunt, suffers severe PN, hands and feet! She had a abnormal spine MRI, that doctors claim is the cause of her PN.

Presently she is in a wheel chair, and suffered a nervous brake down from the trials and tribulations of this disorder. Seeing her, so helpless, and sick frightens me, as selfish as that sounds. She lives alone, and has aides care for her. I feel I should help her, but am already caring for my elderly mother, who is very frail and she also lives alone.

In addition to the above, for approx. 25 years I have suffered from migraine, about 10 yearly. I take fioricet on the onset occasionally, and it takes the edge off. My migraines have actually improved a bit, rather than worsen.

I did have an abnormal MRI, about 5 years ago, revealing small white spots in the white matter of my brain, however several neurologists that studied the MRI state it could be from migraines, and since it has not changed in years and my migraines have vastly improved, not to consider it a worry.

My weight goes up and down, presently I am overweight, and need to lose a good 25 or more pounds to be at a healthy weight since I am only 5'2" and very small framed.

PN and foot trouble history:

About four years ago, two toes on my left foot felt slightly numb, I did not think to much of it at the time, however I was over weight, and wanted to lose weight for my daughters wedding so began a brisk treadmill work out daily. I did lose a bit of weight, but ended up with heal spurs in both feet. Ouch! I also have broke both ankles, that pain nothing compared to my PN, believe it or not!

Soon after I noticed that the two numb toes turned to 3 numb toes, then 3 numb toes lead to 4, then 5, the numbness spread to the top of my left foot.

The numbness then turned to pain, shooting stabbing pain.. I asked my neurologist and they did a EMG study, that revealed a pinched nerve in my lower back, and the doctor had no concerns, gave me a scrip for neurontin, and a script to get PT, for lower pinched nerve on my back.

I never took the medication, however did go to a few PT therapy, but then my husband's insurance turned to very limited insurance and would not cover many things, including PT. The few PT treatments did not help.

At the request of my family doctor I saw a spine specialist, he ordered a back MRI, the MRI of my spine was completely normal. The spine doctor stated he did not believe I even have a pinched nerve in my spine at all.????

This new light on the subject caused me to become suspicious of my my neurologist's diagnose, who still states that my PN is caused from a lower pinched nerve in my back, and states if I lose a few pounds I will feel better.

I am also angry, due to I have limited health ins. and the cost is in the thousands for tests and doctors which are all not covered.

Now four years later, I suffer from SEVERE PN, it has spread to BOTH feet, toes and ankles, and the backs of my lower legs. The symptoms I suffer are the same as many of the symptoms I hear of on this forum, that many of you unfortunately suffer or have suffered from.

Up until recently I could tolerate the symptoms, and the PN pain was mainly at night, starting with burning when I first rested, then by morning the burning stopped and I was left with just the "odd numbness." I would continue through my day, knowing it was there, but there was not a great deal of pain involved.

Presently , the numbness is almost indescribable, I can feel touch, but its a numb touch, my skin is very sensitive. My left foot has become increasing worse in just the past couple of weeks, why I have no clue, but it has. Pain, burning, it's really dreadful. With this I have a overall feeling of fatigue, and not feeling good, leading me to feel kind of depressed, and to be honest I am scared!

I also get strange burning in my upper legs, and even the tip of my spine at times. The burning moves around, and comes and goes.

The daily task of putting on socks and shoes is painful, walking is like walking on pebbles, the droplets from the shower even cause pain.

I just dread night time, when I first lay down oh my the pain, burning, and shooting pains, become just just terrible. I wake up often, and have poor rest. This leave me tired, and I am sorry to say I have become miserable and worried. I don't understand why my PN appears to ease up for a bit, then bang out of know where the symptoms become worse.

I over all do not feel well lately, find it hard to carry on, be happy, productive, and exercise it difficult due to the PN pain. I love to walk, and find it painful, and when I am very active the PN appears to increase.

As I stated above I have limited health insurance, it covers NO doctors appts. and very little on tests, my husband had ins. through GM, and was a 35 year employer with them, up until two years ago, when we though it was safest for him to the early retirement. My job carries health insurance, but it is very costly, so for the time being health care is costly, and our income is limited, leaving me more anxious, and less able to receive proper treatment, and more aware of how appreciative I was of our excellent health insurance up until two years ago...and never take any benefit for grated!

My family doctor repeated my blood work, last month, stating that my sugar is still slightly elevated, however I am considerably low in B12, very low in Vitamin D, and also slightly low iron.

So now I have been advised by my family doctor to get a vitamin B12 shot weekly, take vitamin D, and iron supplements, and Gabapentin 100MG.

I fear taking even vitamins, as silly as that sounds, although I have received a few of the shots. I have not started the Gabapentin, due to many concerns and fears of the side effects.

Personally I am happily married, live in the country in WNY. I have one wonderful married daughter, and my profession is in the mental health and medical field. I enjoy reading, writing, music, arts, walking/bike riding, snowmobile riding, (have to in WNY) and gardening, we have a small farm.

My goal is to become more educated on my disorder of PN, treat the disorder by way of natural medications and supplements if possible, presently I take only aspirin and Tylenol, stay active and lose weight that would reduce the pressure on my feet, and learn to cope with this disease with less fear.

I do have some questions.

Thanks for reading, and I hope possibly I can receive support and advice from this forum, and present it to my family doctor if it is treatment information. He is the doctor that is affordable for me presently, and he is fairly educated on PN, even though not a specialist he will have to do.

Happy St. Patrick's Day!

Pattylyn