Creutzfeldt-Jakob Disease Support Group

Mixed Signals… Short Circuits… Pain?


If you are a caregiver of someone that is in ANY kind of pain or opposite... no pain and having numbness... memory problems or...

It is caused by NERVES... mixed signals and short circuits

Either Autonomic Nerves sending the wrong signal out - effecting small fibers - everything that your body does or suppose to do automatically without you telling it to do it..

Large Fiber nerve damage - Peripherial Nerves OR

Central Nerve System which is your brain and spinal cord - regardless of the condition. Anything from MS to Parkinsons to pinched nerves and spinal cord injuries, strokes or other injuries...

I think that this site will help you with resources and links, not only on pain management but how others have dealt with it.

There are new topics everyday - a lot of research goes into the Neuropathyteam posts which provides many resources and links.

http://dailystrength.org/groups/ne...

Thought we could help..

Sincerely,
NeuropathyTEAM

In the beginning of the 1980s a new practice began of raising Cattle on a new ground meal (bones) diet, that essentially included,spinal cords and Brain tissue of other Bovines. This caused the prion protein to enter the cattle foodchain, causing the disease of BSE, in these cattle.
The Cattle then entered the Human foodchain and consequently the prion infected the Human brains, causing an over production of naturally occuring proteins leading to CJD.
These is no known cure for CZD, the prion causes neurological damage initially, followed by a spongiform process developing in the brain. Most people with CJD develop rapid dementia within
a year. In the UK only three people survive with CJD.
I hope to God you dont have this awful disease, as the prognosis is generally not good.

I am researching my illness. I have neurological damage in my hands and feet. Paraethesia, I have Chronic Fatigue, and some short term brain memory loss. I am researching the various possibilities of what I might be ill with. CJD is one option, Multiple Sclerosis another,
Lyme disease is another option too. Fibromyalgia too.
I have tried antibiotics over the last 8 months and have made various but not lasting progress.
A nerve conduction test proves that my ULnar nerves are damaged
( ring and small finger of each hand)

My father passed away from CJD 18 months ago. He'd just finished months of chemo for colon cancer, and had developed neuropathy in his feet.

We were told it was a holdover from the chemo, but 4+ months after his last chemo treatment, it wasn't getting any better.

Soon, he began having odd episodes. He and my Mom are huge coffee fans, and once, he went to the cupboard to pour himself a cup, and forgot why he had the cup in his hand. He also said he didn't know what it was, why he had it in his hand, or what he'd do with it if he did know.

He was also very unsteady on his feet. Would get dizzy if he stood too quickly. Again, we were told the chemo had impacted his blood pressure, and they began monitoring it. Aside from a few exciting false alarms due to his using the cuff wrong, and getting crazy readings, his blood pressure was stable.

The night before Father's Day 2007, he fell. He wasn't injured thank God, but it was clear he needed to be tested for what the heck was going on.

Tests in the small hospital in Maine hadn't uncovered what was going on, so into Boston he went. Within hours, he'd been dx'd with CJD.

We, the family, had no idea what it was, but given the doctors couldn't make eye contact with us, and the head of neurology whispered CJD when he told us, we knew the prognosis was grim.

6 weeks later, he was gone. I won't go into the details of the different symptoms he had as the disease progressed, suffice it to say that it was so unfair for this man who'd been such a gentle loving man, to go through what he did. Thank GOD, there is not pain in CJD for the patient. Confusion, and frustration yes. But head pain, no.

I will also share that loss of ability was pronounced and incredibly rapid. It was not uncommon for him to regress in the period it would take us to eat lunch while he took a short nap.

Wornout, I pray for a different diagnosis for you.

Dave, CJD is much more fast-moving than 4-5 years. I don't recall the average life expectancy of someone with CDJ, but it's months, not years.

CJD is an awful, fast moving disease.
There is no cure.
I lost two family member to CJD.