Re: questions and really no answers

[Guest guest]

Fran,

Venting helps, especially when you know that the people reading your rant have

been in the same places you are right now, and we understand where you are. You

brought up many of the issues that people with PN are experiencing. I have

experienced these in my 12+ year struggle to find relief from this pain that

covers my body.

As an Engineer, I like to have all of the answers to any question; you can't

solve a problem until you define it. In my case, we have run all of the tests

that address the issues around PN. One of my docs told me that he had ordered

test he never thought he would deal with once he left med school.

After being told that I am a healthy 59 year old male, at least from the

perspective of 99% of my test results, I finally started to gather some family

history. Of course, I dug up some comments that, had I had them 12 years ago,

would have cleared up many things. Until a few years ago, I did not know that

my father's skin was so sensitive that my step-mother had to make sure the

sheets didn't have any wrinkles in them before he went to bed. The wrinkles

against his skin would cause enough pain to wake him up. A friend of Dad's also

told me of several conversations where my father said he could not wait to take

off his blue jeans because it felt like someone was rubbing very coarse

sandpaper on his legs.

That seems to fit perfectly the issues I am having with small nerve fiber

neuropathy. When I combined that with stories of a great aunt and a second

cousin both being paralyzed from the waist down over a two week period, with no

cause ever determined, I did a quick family tree. Going back to my father's

maternal grandmother I came up with eleven people, seven of which have

neurological problems ranging from muscle tremors up to paralysis. Once I did

that, I was able to pin the cause on genetics and move past the need to

investigate any further. You may want to talk with older family members and ask

if they know of any others with neurological symptoms.

Depression seems to be an inevitable side effect of what we are going through;

only the extent and level of depression are different. I have been depressed by

the loss of a fully-functioning body. I feel grief and anger over this loss,

the experiences I cannot have, the travelling I can't do, and the people whom I

thought were friends but who have not believed nor supported me. And, after 12

years of pain, ten years of permanent disability, and substantial relief only a

dream, I still hope for the day that I may be able to resume a normal life, go

back to work, travel, and function as a human being.

I hope my experiences will help you somehow to validate your own feelings; we

are all being dragged behind the same pickup truck. And, your feelings are

yours, not how someone else thinks you should be feeling.

>

> So i read all the posts and often am left wondering does anyone really ever

know what exactly this disease syndrome is composed of and how much is the

individual genomes responsible for how it manifests in our bodies, and am i the

only one experiencing the bizarre symptoms often i come here and have wonderful

ah ha moments and sometimes a bit terrified too at the experiences others have

that i have not yet had, thinking oh great And like many i have the moments of

despondency at the lack of compassionate understanding from friends and family

and doctors but still keep the eternal hope that someday ill wake and my life

will be different. damn it Dorothy you didnt leave me any ruby slippers.I have

finally recieved some medical coverage and decided that i would become a patient

where a friend is the head nurse as she would be a great advocate that will be

able to validate some of my issues and not have them all pawned off to mental

health as the other doctor i had did of course there is going to be underlying

mh mr issues after all feeling like youve been dragged behind a pickup on a bad

dusty gravel road every day does something profound to your outlook on life hell

yeah im depressed im fourty seven years old and have lived with this crap since

1987 so now that i ranted on for a moment ?s does anyone else get extreme

headaches from taking pain meds i do not take them daily only on occasion if the

pain is truely unbearable but when i do within an hour i have a blaster of a

headache that i can actually feel building up and it literally ends up traveling

down my spine the only meds i take daily is nuerontin 300 mg and elavil 50 mgs

at night and occasionally for bad pain oxicodiene .0.5 and zanex .5 if i get

anxiety. so just wondering does anyone have a clue as to what this is and how do

i bring this up for the new doc and what works for pain thanks for hearing my

rant. franni

>