Re:Suggestions

[Guest guest]

Dear Darrin, You need to take your medical matters into your own hands. Too many of us rely on doctors that really do not have any more answers then you do. They too are learning as you go through your disease. I am not putting them down, or taking away from their expertise, but they can only help you as they learn how to deal with your symptoms as they learn, are provided new and up to date information, and as the pharmaceutical companies provide more drug therapies to curtail the symptoms. No thing that is provided for us are cures, they are

therapies, that only curtail the symptoms. Healing comes from the body, when put in a state where it can heal itself. Therefore, you can do with it what you want... I would hope and pray that you would do your own investigation and seek other health and wellness alternatives. There are other avenues that this group can take, but many choose not to because of cost and effort. The cost is your life, and each person needs to determine what their life is worth to them. I know how difficult it is to over come the challenges of Neurosarcoidosis when you just don't feel good 24 x 7 365 days a year. But there is one thing that I know and that is this. You are the only one who really cares about you! If you do not take the initiative to get yourself better, no one will do it

for you. It is that simple... so here is my story...

Hello all, it has been a while

since I posted to the group. For those of you who do not know me, I have

suffered from Neurosarcoidosis since 1995. Was diagnosed having Sarcoidosis in

1996 after removal of the middle right lobe in my lung and from there moving

forward went through a battery of tests and finally in 1998 was diagnosed with

Neurosarcoidosis.

It was not until 2005 that the

Neurosarcoidosis took its toll and I was unable to control the symptoms, and

remain cognitive for any period of time. I was hospitalize and in quarantine

for a week with infusions of 120 mg of prednisone to attempt to control the

process.

Needless to say during this 16

year process my body went through all kinds of contortions, muscle, joint

stiffness and pain, massive headaches, loss of cognitive thinking and the like.

Finally in October of 2005 SSDI awarded me disability, but needed to fight my

company through all of 2005 to receive disability from them.

As you are all aware of if they

can not see it, you don’t have it. Well finally through many spinal taps, the

evidence of my Neurosarcoidosis shows up in my protein count and I was awarded

long term disability.

During the following years, and after trying every drug available, I continued to lived with the

pain and settled in on my regiment of 20 mg of prednisone daily and 24

Ibuprofen pills a day.

Well a little over a year ago; I

was approach by a friend about trying a new supplement that is a high potent

antioxidant, Nopalea. It is derived from

the nopal cactus in Northern Mexico and Southern Arizona. Along with this I was

introduced to another supplement by the name of Adaptogen 10 plus. Both of

these supplements are provided by a nutraceutical company in sdale Arizona,

Trivita. With the use of these two products my pain is all but gone.

These products were formulated to

reduce and in many cases eliminate inflammation in the body. Because of our

autoimmune disorder our bodies are plagued with vast quantities of chronic

inflammation. In fact our immune system

is completely out of control, causing our bodies to be inflamed and in constant

pain as it is attempting to relieve our Neurosarcoidosis condition.

Because of my inflamed condition;

the ability for these supplements to take control and to alleviate my chronic

inflammation condition, required me to consume 5 ounces of these products daily

(5 times greater then the recommended dosage) for over a month before the supplements started to overtake the inflammation,

allowing my body to go back to a normal state.

In February of 2010 I was told

about another treatment. That might be able to help out my overall health situation,

called Upper Cervical ChiropracTIC. This deals specifically with the C1 and C2

vertebra in your upper neck. These two vertebra are not physically connected to the rest

of the spine, but are connected by ligaments and muscle.

About 100 years ago, it was discovered

that this is where the brain stem enters the body and allows your nervous

system to communicate with all of your body parts. There are literally millions

of nerves that leave the brain stem, traversing throughout the body providing

the nutrients, blood flow, and stimuli needed for the body to function and

repair itself.

What was discovered is that the

C1 and C2 vertebra can become misaligned due to physical or emotional trauma,

stress, or through inflammatory conditions taking place in the body. If the C1

and C2 become out of alignment, then the brain stem nervous system becomes

impinged (pinched) and the signals going throughout your body become

interrupted and the normal healing and repair process is inhibited and

sometimes completely cut off.

Doing further investigation on

this matter, I decided to see an Upper Cervical ChiropracTIC specialist in

South Carolina. These doctors specialize in properly aligning the C1 and C2

vertebra so that any impingements are alleviated. I have been on the treatment

for six weeks now and it has done remarkable things for me. My headaches are

gone. Since about two weeks into the treatment my head aches have disappeared.

My body is getting stronger and I am losing weight even though I am still on 19

mg of prednisone daily. Next week I will be reducing my prednisone intake to 18

mg daily and will tail off 1 mg each week until I no longer need to take the

prednisone.

Upper Cervical ChiropracTIC Specialist

do not believe in constant adjustments. What they believe in is to get the C1

and C2 in alignment, and then monitor your brain stem for impingements. They

monitor this through the use of a high tech scanner using heat as a measurement

of how well the nerves in your spinal column are performing. Heat means that

the blood flow is working normally and properly. Cold spots or lack of heat

means that there are impingements and that the flow of nutrients and data

transfer throughout the nervous system is being impinged and is preventing the

nervous system from working properly.

During the first 3 weeks, I was

adjusted 5 times. Since then, no adjustments have been necessary. As I

mentioned, my headaches are gone, I am getting stronger every day, and my

recovery time is days not weeks.

What I mean by recovery time is

this, whenever I use to bend over, to pick weeds, vacuum, or due minor chores,

my body would be in pain for days if not weeks. Since using the supplements and

going through the Upper Cervical ChiropracTIC therapy, my recovery time is

sometime hours and not more than a couple of days.

I write this, because I do

believe that there is hope for you. I have had all but written off my ability to

have some level of a normal life. I now believe that I too can participate once

again with the living. I am now doing things that I have not been able to do

for years.

So in conclusion, I would

recommend that you start a supplement regiment using the Nopalea and the

Adaptogen 10 Plus from Trivita. I also would recommend that you find an Upper

Cervical ChiropracTIC doctor as close to you as possible to find out if you

have any impingements at the C1 and C2 vertebra.

It was amazing; I met people from

all walks of life at the clinic. We all had one thing in common and that was we

had no hope, as the medical profession had told each and every one of us that we

were stuck with our fate and there was nothing that modern medical science

could do for us.

On the other hand the Upper

Cervical ChiropracTIC clinic said this. The body was made to heal itself. If

given the proper nutrients and nervous system function, it can and it will heal

itself. As Upper Cervical ChiropracTIC doctors, it is our mission to align your

nervous system so that it can operate at the optimum peak performance that God

intended it to do.

What we do is align your C1 and

C2 vertebra, which provides your body the ability to optimally heal and take

care of itself. Once you are properly aligned, you are then monitored to make

sure that you are remaining in alignment. Our goal is not to readjust unless we

have valid evidence that your nerves are impinged and an adjustment is needed

to free up this impingement. The ultimate goal is that your body would be

strong enough to realign itself by using the muscles and ligaments in your neck

to self align. By using the supplements that I am taking and by keeping my nervous system in alignment, my body is responding wonderfully. I am feeling stronger everyday, my neuropapthy in my right leg is going away and I am getting feeling back in areas of my body that I thought that I had lost forever. As I said this has been a slow recovery I am a year into the process and everyday I am getting better. I do not know if I will plateau, but if I do, that is ok, because I am 500% better then I was a year ago.

Knowing all of this now, I am on

the road to a better quality of life. Will I become healed from my

Neurosarcoidosis, I do not know. However, I do know this, my body is responding

very favorably and I am feeling better than I have in 16 years.

I recommend that you investigate

the information that I am providing you. If you ignore what I am telling you, it will saddened me.

The question I will ask you is

what I had to ask myself. What if all of this works and I can once again live a

normal life. Is it worth the effort to find out; I decided it was, and now I am

reaping the rewards of my efforts.

As becoming ill with

Neurosarcoidosis was a journey, getting back to wellness is also a journey and

will not happen overnight. I hope that all of you who read this will consider this option for yourself. It has

been over a year for me to reach the level that I am at. This has not been an

instant recovery; it is a day by day process. Health comes by practicing

healthy habits daily, one day at a time.

I personally believe in a higher

being. I believe in God and Jesus as my Lord and savior. I know that not all of

you have the same believe system as I do and that is ok, however I tell you of my

faith as it was this faith that allowed me to move forward. This belief gives

me the strength to trust that God wants a better life for me and that He wants

me to be healed.

In the bible in the book of

in chapter 10 verse 10 Jesus said; the thief comes only to steal and kill and

destroy. I come that you may have life and have it more abundantly. I choose to

believe this so I moved forward to look for ways to enjoy the abundant life.

I hope that this post brings

encouragement to all of you. May God bless everyone who reads this and gives you the abundant

life as He is giving me.Warm regards, Bob Casper

Suggestions?...From:Darrin Vernier

...Add to ContactsTo:"neurosarcoidosis "

<neurosarcoidosis >

Hello,

I was operating under the assumption I either had ms or neurosarc.All

tests for ms came back negative. They did a chest x ray, then a ct.This

led them to follow up with a pet. I have a 2 cm lesion in one lung.It

is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the

near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro

symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust

weaker and more tired than I used to be, especially when walking. My

ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if

it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps

swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch

difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistance

at the moment.

Sorry for the length of this post but I hate answering questions without

background

info. My question is whether anyone has been through a similar experience or has

suggestions as to a course of action if any.

Cheers,

Darrin