Accelerated Cure Project 9th Repository

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Accelerated Cure Project 9th Repository

Postby Loriyas » Sat Sep 12, 2009 12:23 pm

ACP opened its 9th repository last month in Colorado. The 10th one is slated for Stanford.

http://www.acceleratedcure.org/news/bcp ... erpost.php
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Postby euphoniaa » Sun Sep 13, 2009 12:50 pm

Thanks, Loriyas!

I just found out from your link that the MS clinic I go to is part of the repository project. I think I looked into the ACP when I was first diagnosed, but figured it was too far for me to participate. I agree with them that MS is more likely a syndrome than a single "disease."

I've always thought it would be interesting to study my extended family, since we have two demyelinating 'diseases' AND a missing myelin gene, but I just found out that those who suffer from peripheral neuropathy are excluded - due to the common symptoms between the two. I plan to contact my clinic next week anyway, though.

For some reason researchers always seem more interested in the connection between other autoimmune diseases or CNS diseases and MS. Maybe they've been looking in the wrong place? :)

HNPP and peripheral neuropathies in general are rarely listed as MS mimics even though the PNS makes up every nerve outside the CNS, and thus their damage can affect practically every part of the body, just like brain lesions are purported to do. I've always considered HNPP to be MS without the brain damage, but I have that, too. :)

I post about the PNS all the time, most recently in this thread:
http://www.thisisms.com/ftopic-7757-day ... asc-0.html

Peripheral Neuropathy Symptoms (from Mayo Clinic)

Your nervous system is divided into two broad categories. Your central nervous system consists of your brain and spinal cord. All the other nerves in your body are part of your peripheral nervous system, which includes:

■Sensory nerves to receive feelings such as heat, pain or touch
■Motor nerves that control how your muscles move
■Autonomic nerves that control such automatic functions as blood pressure, heart rate, digestion and bladder function

Most commonly, peripheral neuropathy begins in the longest nerves — the ones that reach to your toes. Specific symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:

■Gradual onset of numbness and tingling in your feet or hands, which may spread upwards into your legs and arms
■Burning pain
■Sharp, jabbing or electric-like pain
■Extreme sensitivity to touch, even light touch
■Lack of coordination
■Muscle weakness or paralysis if motor nerves are affected
■Bowel or bladder problems if autonomic nerves are affected
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby pinda » Sun Sep 13, 2009 4:51 pm

Hi. I find this interesting. Been going through this "gray" dx of Central Nervous System Disorder possible MS for 6 years. Most of my symptoms match the PNS list. Will have to have a look. See my Neuro next week after another MRI to see if any changes. Unfortunately the machine was a newer one than last time and changes seen may have been there but not seen on the older machine. Asked this before I did the test and tech. said it would be OK. What a waste of $ for our medical system. Thanks for the info, Linda
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Postby euphoniaa » Sun Sep 13, 2009 6:02 pm

pinda wrote:Hi. I find this interesting. Been going through this "gray" dx of Central Nervous System Disorder possible MS for 6 years. Most of my symptoms match the PNS list. Will have to have a look. See my Neuro next week after another MRI to see if any changes. Unfortunately the machine was a newer one than last time and changes seen may have been there but not seen on the older machine. Asked this before I did the test and tech. said it would be OK. What a waste of $ for our medical system. Thanks for the info, Linda


Hi Linda,

I don't want to confuse people who do show brain/spine lesions and make them think they have a complete misdiagnosis...but to remind them that even with a MS dx, there are many other medical conditions with the same symptoms, and it's NOT always MS when you get them.
Peripheral neuropathies are unlikely to cause CNS lesions. (See the link to the other thread.)

Both CNS & PNS problems can show very similar symptoms. But the term, "peripheral neuropathy" in general just refers to a group of symptoms within the PNS with varied causes, not usually a specific disease like mine. So, maybe the latest symptom is NOT a dread exacerbation. Maybe that symptom is NOT proof of MS progression. Maybe it's NOT a new brain lesion in a specific spot. MS is not that precise, and many of us have more than one medical condition anyway.

It's just something to keep in mind. Personally, whenever a weird episode hits me, MS is the last thing I consider and I can usually find a much more obvious & likely cause before I finally blame MS for it. :)

Good health to all!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby euphoniaa » Wed Sep 16, 2009 8:05 am

Well, I contacted my MS clinic and found that they've only been a repository for the Accelerated Cure Project for a short period of time, which is why I didn't know about it. And FYI, this is what the ACP does for MS:

"Accelerated Cure Project for Multiple Sclerosis is a national nonprofit organization dedicated to curing MS by determining its causes.

Our main effort is the creation of a large-scale, multidisciplinary MS Repository of blood samples and data from people with MS and matched controls. We make these samples available to researchers investigating the causes of MS. In exchange for access to the repository, researchers agree to return the data they generate from the samples so that results from disparate experiments can be combined."


But...NO, according to the study coordinator, they do NOT want anything from me to add to their samples. Peripheral neuropathy is definitely an exclusionary factor, since it's too similar to MS and, I suppose, they're afraid that makes someone's MS dx suspect, thereby skewing the data.

I called back and left a message that I have one of the most definite MS diagnoses the neuro had seen, but I doubt she'll reply. I do plan to take it up at my next neuro visit.

So...the lesson for those of you who are undx'd is - peripheral neuropathies can definitely mimic MS!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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