Grateful......
 

I must say, even though I am very frustrated and depressed at times, I am trying to recognize the gratitude in not having MS or PD. I was given a Spinal Tap and 3 MRI's and Dr. confirmed I did not have MS. I also had a PET-SCAN for Parkinsons's which turned out Normal.

Just wanted to share my gratitude, this is by no means a "walk in the Park", but it could be worse.........

Always true, it could always be worse, although, that which we go through now, is enough for us to deal with. There are days I am down, and I will say, "How much does one person have to deal with?" Then I kick myself and remember, it could always be worse!

Sure things could be worse, but it's also true that dealing every day with something that has so changed the life we're used to living is daunting. So it's perfectly normal to feel and/or depressed from time to time. I think we at this forum all recognize this and are hopefully supportive when somebody is not having such a great time coping.:grouphug:

Best wishes,

Sheltiemom

by no means.......
 

Please don't misunderstand me, this is a tough one. I could cry everyday, if I let myself, it is like having a new body. It is hard to make a peace with this new body. I think back at the body I had just 2 years ago that did not have these feelings and took it for granted. Now, inbetween each sensation/pain......sometimes I can go 60 seconds on a good day, I get a taste of the old me. It makes me look at life so differently. Never take anything for granted........it can be gone in a heartbeat!

It is hard to make peace with a body that hurts 24/7. Anyhow I am glad those tests came out ok. Hopefully things will look up soon. When people ask me how I am I sometimes say things good be better but things could be worse. I am supersticious.Just try to face each day as it comes and do the best I can. Feel better all

Please stop complaining/////
 

fOR THOSE WHO HAVE NOT RZEAD MY STORY. I GOT MY PN FROM ZOCOR
12 YEARS AGO. FOR MONTHS MY PAIN EACH DAY 24 HOURS WAS 10-15.
JESUS AND A GOOD FRIEND KEPT ME FROM KILLING MYSELF. JESUS LED ME TO A AQUAINTENCE WHO TOLD ME ABOUT HIGH VOLTAGE TREATMENT.

AFTER 43 TREARS I COULD ONLY STAND 15 VOLTS. STARTED AT 4OO. I BOUGHT A TENS UNIT AND IT HELPED FOR A WHILE. THEN IT STARTED UP AGAIN. I WENT TO THE VA AND WE TRIED MOST EEVERYTHING TTHEY HAD AND NO HELP.THEY SAID MORPHINE. I STARTED 1 30MG. A DAY. AFTER SEVERAL MONTHS I WAS UP TO 8 A DAY BUT MY PAIN LEVEL KEPT DROPING.I TOOK 8 A DAY FOR FIVE YEARS.WITH MY PAIN MOSTLY AT 2-3.

I LOWERED MYSELF SLOWLY TO 2 A DAY AND THATS WHERE I AM TODAY.

THERE HAS ONLY EVER BEEN ONE HEALER IN THIS WORLD.


HIS NAME JESUS

My church believres in healing like myself . they are layiny hands on me 2 a week asking to heal me. I know he eill in his time here on earth or when he calls me home.

sto[p complaining
 

[QUOTE=george75;712203]fOR THOSE WHO HAVE NOT RZEAD MY STORY. I GOT MY PN FROM ZOCOR
12 YEARS AGO. FOR MONTHS MY PAIN EACH DAY 24 HOURS WAS 10-15.
JESUS AND A GOOD FRIEND KEPT ME FROM KILLING MYSELF. JESUS LED ME TO A AQUAINTENCE WHO TOLD ME ABOUT HIGH VOLTAGE TREATMENT.

AFTER 43 TREARS I COULD ONLY STAND 15 VOLTS. STARTED AT 4OO. I BOUGHT A TENS UNIT AND IT HELPED FOR A WHILE. THEN IT STARTED UP AGAIN. I WENT TO THE VA AND WE TRIED MOST EEVERYTHING TTHEY HAD AND NO HELP.THEY SAID MORPHINE. I STARTED 1 30MG. A DAY. AFTER SEVERAL MONTHS I WAS UP TO 8 A DAY BUT MY PAIN LEVEL KEPT DROPING.I TOOK 8 A DAY FOR FIVE YEARS.WITH MY PAIN MOSTLY AT 2-3.

I LOWERED MYSELF SLOWLY TO 2 A DAY AND THATS WHERE I AM TODAY.

THERE HAS ONLY EVER BEEN ONE HEALER IN THIS WORLD.


HIS NAME JESUS

My church believres in healing like myself . they are layiny hands on me 2 a week asking to heal me. I know he eill in his time here on earth or when he calls me home.

[QUOTE=Kitt;712024][COLOR="Navy"]Sorry if you thought that I misunderstood you. I'm just saying how things pertain to me. Again, I'm sorry if I offended you.

Actually, the gist of it is from an article I read a few years ago pertaining to grieving. It just meant that a person has a right to grieve for their loss just as the person down the block does. And grieving, in one stage or the other, is constantly going on as we lose something else that we used to be able to do because of a disease. I live with pain every day. Some days are better than others. But I do have pain every day. So far I can tolerate it but that doesn't mean that it will not get worse. In all probability it will.

I agree that we should never take anything for granted as it can be gone in a heartbeat. So true and thank you for posting that. :) Take care.
I will pray to Jesus to heal everyone in tis group. george 75

When I was writhering in pain the other night my wife said,, there are people worse off then you,, I told her I am not one of those other people, I am me, I hurt ,, as for laying on of the hands,, I need the whole crowd at a Steeler game to lay hands on me and maybe get some relief,,

There are nor should there be any 'contests' on pain.
 

Why? Because HOW YOU feel your pain is likely quite different than how others feel theirs...
Some folks feel that they have to shout out about their pain. Here? Just speak it and try to do it quietly and with compassion for others.
Some here suffer compounding insults as a result of whatever started the neuropathy[ies] and are far less mobile than the majority here.
I for one, am simply grateful that once I go to sleep? I don't feel the pain. That I can do this? IS A GIFT.
I do mourn what I COULD do 'before'? But I've learned to accept where I AM 'now'.
What has helped me, and others has been the kindness of many here. They taught me how to learn about PN and all it entails [and, some PN's can be deadly serious] and how to 'keep' myself better physically and nutritionally to at least, keep 'things' from getting worse.
Like those w/MS or PD? We too have to go thru a sort of 'mourning period', as we ARE changed. Then, slog on. Hopefully fighting, biting, kicking and screaming every step of the way!
We must get smart, then smarter in the self-advocacy quarter and speak up often in forums we'd never imagined being in. Medically, socially and other venues.
Lastly? We must be ALERT! In my case, it's all hindsight, but a simple autoimmune issue cascaded into one expensive set of other immune issues! Avoid that at ALL COSTS! READ! LEARN! GET SMART! BE POSITIVELY ASSERTIVE! You've got the cup-whether it's half full or empty? The CUP of knowledge is in your hands to gather what you need to get by.
When I'd first gotten my neuropathy, I was in PAIN 24/7, I cried often, screamed at the walls often. And surrendered as it did no good, nor did anyone understand [still don't]. And I got my revenge by learning and getting treated for my PN PROPERLY. And....that was before I'd found these great folks here!
My heart goes out to you, I truly hope you can find your way to some sort of sunshine.. Complain, but ask questions in the process, so folks here can help you w/some of those pesky aspects of it all...from shoes to socks to lotions/potions and vitamins... We're here and we can be good shoulders too.
:hug::hug:'s - j

Beautifully Put Dahlek.......
 

Everything you said was perfect. I myself can relate personally to a few points you made, I too just said the other day how grateful I am that my pains stop when I sleep, I never thought before this happened that I would be grateful just to be able to sleep, so many things I took for granted. Yes, I have gone through a mourning period, the body I once took for granted is gone, I am in the process of learning to live with this new body.

I too have cried just about everyday for a year and a half and have yelled at walls and punched pillows. There is no one in my life that understands this to this day except the people on this site, another reason to be grateful.

I am still looking for a cause for mine, I am not chalking it up to idiopathic too fast, if there is a cause that can be controlled it will slow the progression of the neuropathy. We must be our own advocates, Dr's only go so far, when we become less cost effective for them, they stop searching for a cause and just keep increasing the meds (that is where I am now.)

Thank you for your post, it was very inspiring and at the same time very realistic.

If you are gluten intolerant as you mentioned before, that very likely is your cause. Gluten causes us to malabsorp vitamins and minerals, in turn causing deficiencies, which in turn will cause nerves to die. If you go gluten free, and that means, totally gluten free, then the progression should slow if not stop. It may not go away...some epople whom go gluten free will see neuropathy symptoms gone, that didn't happen to me.

I also had to start taking Vit B12, which I have been taking for nearly 6 yrs. If I miss even 3 days of B12, symptoms will begin..my ataxia comes back, I have vibrations in my feet, drop foot returns..a number of symptoms.

Have your doctors run vitamin levels, and get a copy, don't rely on them to tell you where you are low. I find most doctors only look at what a lab highlights, and even if your level is just 1 point inside a "normal range" they do not highlight it. I found my Vit D to be low, and my ferritin..I started taking B12 on my own long before a doctor mentioned it to me.

We do have to be our own advocates. I fight taking meds, my neuro knows this. As of now, I am only on vitamin and minerals, no meds...I do have a lot of pain I deal with nearly daily in my neck/shoulders and headaches, but it's still livable so I just deal.