[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

[Bruce 01]

Hi Patti, I read your story but I can't offer you much help, I'll let others here do that.

I am curious as to what area you folks live in. I grew up in Webster, lived in Hamlin from '75 til '82, when I moved here between Honeoye and Naples. Are you anywhere near Hamlin? I lived 1/2 mile from the big lake.

[mrsD]

Welcome to the forum Patti.

I think your bolded statements reveal your task for now.
Fix what needs to be fixed and see what happens.

For now I think you should read the board carefully.
There is alot of experience of others and information to be had here.

[jsrail]

Patti, sorry for your sitch, but I don't think you should be so worried about taking the Gabapentin, especially the low dose he recommending. The side effects for that low dose are probably very minor if anything. I take 3600mg a day and really only get tired from the Neurontin (Gabapentin is the generic version). Now, I have a really high tolerance to meds, so I know my case is a bit different, but I think you should still give it a try. I find it works real well for PN pain. My situation is a bit different than yours as I hav full body SFN and the pain level is way more than Neurontin can deal with alone, so I take a high level narcotic with it.

As MrsD (who is a real knowledgeable poster here) has said, keep following the threads on this forum and you can get a wealth of information and ideas. Keep your chin up and know we all feel for you and your sitchuation.

Jay

[jannaw]

I agree with jsrail, don't be so afraid of the gabapentin, I've been on it four years now with a couple of breaks to try cymbalta and lyrica. I told my pharmacist one time I was tired of the whole lot and thought I would just quit taking everything. She said you might, but then the pain may come back with a vengence and you may never again achieve the level of pain relief you have now. That was good enough for me. The only side effect I have is a couple of hours after my mid-day dose I get a sort of brain fog for about 30 minutes. As far as resting at night, I've been on 1 mg. of lorezepam at bedtime for the last four years also, couldn't rest without it. I also take norco four times a day for my back pain, it's been a trial & error thing to come up with a cocktail of meds that work for me. I still dream about waking up one morning and having it gone. Good luck to you and this is a great place to be to start getting all the info you want and need.

[Hope15]

Welcome Patti. I take gabapentin and I do not feel any side effects whats so ever from this drug. We all are different, but the one thing we share in common is that we have all tried to find what works best for all of this. Sometimes it takes trial and error, trying different meds, supplements, diet, etc. Just know that you are not alone and there is always hope.


May I just say that since getting PN, I have sure noticed many women on the net who were in their forties or late forties to early fifties when they where stricken with PN. Interesting...

[GanaQ]

Patricialyn,

This is almost scarry. I just realised that I wrote pretty much the same two years ago as you just did above.

Believe it or not but B12 vitamin, D vitamin and iron supplement helped me a lot overcoming the PN as it was associated with deficiencies. Do not be afraid of taking the supplements, if they have been discovered by blood tests. Iron as the only one has to be monitored by continual blood tests, so it does not get too high.

However, I have also been diagnosed with Hashimoto's Thyroditis - an autoimmune hereditary disease.

As it turned out my thyroid tests were in the normal ranges. Check if your TSH is in your blood work. (I assume that you have asked for copies for yourself or you should ask to have copies of all blood work at once.) In the affirmative is your TSH over 3.0??? Then you could have a thyroid problem.

Often the thyroid tests for antibodies are not taken if the usual results are within normal ranges. My antibodies were sky high - a sign of Hashimoto's. Receiving meds for Hashimoto's has really helped me. I still have the Hashi Headaches as I call them. When the antibodies go down these should be better too.

If you have relatives with different autoimmune diseases (and clearly you have), then you are likely to get one or more autoimmune diseases. Do any in your family have problems with the thyroid?? Goiters on the neck???

Here is the neuromuscular view of thyroid diseases:
http://neuromuscular.wustl.edu/msys/mend.htm

B12 deficency - a good one:
http://www.aafp.org/afp/20030301/979.html

List of symptoms of Hypothyroidism and Hashimoto's:
http://emedicine.medscape.com/article/122393-overview
and
http://www.walgreens.com/library/con...0&docid=000038

I hope that you can use some of this, if not throw it away and keep on keeping on - do not give up!!!!

Take care!

[glenntaj]

--you would be puzzled.

So many of the conditions you've spoken of could have neuropathy as a secondary or even primary effect.

It does sound, though, as if your neuropathic symptoms have come on gradually, as opposed to acutely. That does tend to make compressive effects, such as from a "pinched nerve in your back" (and I think that's a real hazy/amorphous statement, not worth much), a less likely cause. And, now your neuropathic symptoms are bi-lateral, making "pinched nerve" explanations less likely.

Certainly, autoimmune conditions can lead to neuropathy--and most rheumatologists don't have much of a clue as to those that don't involve some variation of the anti-nuclear antibody. There are many others, ranging from those that result from specific antibodies to peripheral nerve, to celiac/ gluten sensitivity (have you ever been tested for that by any chance?), to those that, unfortunately, are the result of blood disorders and even cancers (I would hope that such testing would have been done early and that possibility eliminated, but we never assume here, having had long experience with uniformed physicians).

On the other hand, those nutritional deficiencies could certainly cause neuropathy. Part of the reason I mentioned celiac/gluten sensitivity is that the conditon is far more common than most doctors assume, and can lead to low B12 and D levels such as you've described. Low nutritional levels can themselves lead to neuropathic symptoms, and celiac itself can through autoimmune antibody cross-reactivity to nerve components.

I realize that money is a concern as far as pursuing testing (why I keep advocating for a single payer system here in the US), but a few things you can do:

Get copies of all the testing you have had done, if you haven't already, and report them to us. (I know you've reported some, but we get very specific here--and can talk about follow-up tests that would be recommended.) There's a lot of knowledge and power on this board--it rivals that of a university medical center. (There are even some physicians hanging around.)

Take a look at the Liza Jane spreadsheets--www.lizajane.org--these were designed as a way to suggest tests for neurological symptoms, and for tracking resutls over time, to see if there are patterns.

And, read, read, read--especially what we have in the Useful Website stickies. There's a lot of good info there. One of the best overall sites, which GanaQ mentioned, is the Washington University at St. Louis neuromuscular site--the follwing link is to the neuropathy differential diagnosis home page, where you can investigate some avenues:

http://neuromuscular.wustl.edu/naltbrain.html

Many of us have been through these mysterious symptoms and extended, and expensive, investigations--and not all of us get answers (too many remain stubbornly idiopathic). But you will certainly get a wealth of knowledge and support here that may enable you to decide what paths you want to pursue.

[jarrett622]

but lottsa support. You're far from alone here. There are many different Dx here but we all have things in common.

PN can really suck. But here I've found hope. I felt so very alone until I found this place. The people are wonderful here and very knowledgeable. Welcome!

Barbara

[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