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baba222 12-04-2015 08:50 PM

Article
 
http://www.upi.com/Health_News/2015/...9741449265570/

Hoping and praying is all I am saying!

Cliffman 12-05-2015 10:13 AM

Quote:

Originally Posted by baba222 (Post 1186893)
http://www.upi.com/Health_News/2015/...9741449265570/

Hoping and praying is all I am saying!

Good to know there's something being done for the future. :)

Thanks Baba for posting the article.

Cliffman :hug:

LouLou1978 12-05-2015 03:48 PM

hi there, I am currently being tested for this mutation, my bloodwork got lost last year so I have had to be re-tested for this. It has been found in 30% in people who have idiopathic small fibre neuropathy.

I believe there is a lot of work going into various Nav 1.7 blockers, one of which was convergence, I think they are now getting ready for stage 3 clinical trials:)

en bloc 12-05-2015 07:30 PM

I can only imagine the relief people might get with a breakthrough like this. But I do have one concern. People rely on pain to signal a problem and if you eliminate ALL pain, then how would one know if there is a medical problem? Someone might miss the early signs of cancer or other devistating conditions without feeling pain. What might they do about this? Does this only eliminate nerve pain?

baba222 12-06-2015 11:57 AM

Quote:

Originally Posted by LouLou1978 (Post 1186989)
hi there, I am currently being tested for this mutation, my bloodwork got lost last year so I have had to be re-tested for this. It has been found in 30% in people who have idiopathic small fibre neuropathy.

I believe there is a lot of work going into various Nav 1.7 blockers, one of which was convergence, I think they are now getting ready for stage 3 clinical trials:)

What is the exact test please?

baba222 12-06-2015 11:59 AM

Quote:

Originally Posted by en bloc (Post 1187004)
I can only imagine the relief people might get with a breakthrough like this. But I do have one concern. People rely on pain to signal a problem and if you eliminate ALL pain, then how would one know if there is a medical problem? Someone might miss the early signs of cancer or other devistating conditions without feeling pain. What might they do about this? Does this only eliminate nerve pain?

Yes. Not having pain might have some disadvantage.
I am not sure about just the nerve pain.

LouLou1978 12-06-2015 02:28 PM

Quote:

Originally Posted by baba222 (Post 1187061)
What is the exact test please?

Hi Baba 222, the genetic test is SCN9A - I'm in the UK , they do it is as part of the blood testing for SFN here.

:)

baba222 12-06-2015 05:41 PM

Quote:

Originally Posted by LouLou1978 (Post 1187081)
Hi Baba 222, the genetic test is SCN9A - I'm in the UK , they do it is as part of the blood testing for SFN here.

:)

Thank you so much.

Anyone did this here in USA? What is the procedure?

baba222 12-06-2015 05:57 PM

Quote:

Originally Posted by LouLou1978 (Post 1187081)
Hi Baba 222, the genetic test is SCN9A - I'm in the UK , they do it is as part of the blood testing for SFN here.

:)

I had 23 and me.
What is the particular SNP?
There are many SCN9A to my raw data.
TIA

kiwi33 12-06-2015 09:27 PM

Hi baba222

The information in this link lists many of the SNPs in SCN9A which have been associated with perception of pain; http://www.painresearchforum.org/res...rce/5937-scn9a .

baba222 12-06-2015 11:40 PM

Quote:

Originally Posted by kiwi33 (Post 1187121)
Hi baba222

The information in this link lists many of the SNPs in SCN9A which have been associated with perception of pain; http://www.painresearchforum.org/res...rce/5937-scn9a .

Thank you for the article.
I have a list from the SCN9A but cant find the important SNPs. There are about 50 listed in my raw data. I joined 23 and me after the FDA debacle and was trying to figure out my situation before I had to fork out major cash for more lab work.

I hope someone is in the know.

I can also PM my raw data to anyone interested.

TIA

baba222 12-06-2015 11:45 PM

Quote:

Originally Posted by LouLou1978 (Post 1187081)
Hi Baba 222, the genetic test is SCN9A - I'm in the UK , they do it is as part of the blood testing for SFN here.

:)

Are you able to post or PM the information about this?

Thank you so much for responding and helping me.

kiwi33 12-07-2015 12:14 AM

Hi baba222

"I can also PM my raw data to anyone interested."

If you would like to I would be happy to have a look round and see what I can come up with (no promises).

boiler1993 12-07-2015 10:23 AM

Quote:

Originally Posted by baba222 (Post 1187102)
I had 23 and me.
What is the particular SNP?
There are many SCN9A to my raw data.
TIA

Hi Baba - I had the SCN9A test done in Ohio. The test was after a meeting with a genetic counselor in the neurology dept at OSU who I was referred to by my main neurologist. It was a blood draw here too - they took two vials I believe and then the results were given to me about 8 weeks later (I don't have the mutation so still idiopathic for me) - hope this helps!

baba222 12-07-2015 01:54 PM

Quote:

Originally Posted by boiler1993 (Post 1187166)
Hi Baba - I had the SCN9A test done in Ohio. The test was after a meeting with a genetic counselor in the neurology dept at OSU who I was referred to by my main neurologist. It was a blood draw here too - they took two vials I believe and then the results were given to me about 8 weeks later (I don't have the mutation so still idiopathic for me) - hope this helps!

Thanks so much. Sounds like I will have to go thru some hoops. Was trying to do it and maybe figure it out on the cheap.

Take care.
:hug:

baba222 12-07-2015 01:54 PM

Quote:

Originally Posted by kiwi33 (Post 1187134)
Hi baba222

"I can also PM my raw data to anyone interested."

If you would like to I would be happy to have a look round and see what I can come up with (no promises).

I sent you a PM.

Thank you so much!

kiwi33 12-12-2015 06:04 AM

Hi baba222

PM'd you - my impression is that you don't have anything to stress about :).

DavidHC 12-12-2015 11:43 AM

So what happens if one has this mutation? A little research showed up that it can cause 30% of SFN. So is the idea here (via the article linked to) that finding how to block this mutation will resolve the SFN?

I share the concern re blocking all pain. That could be immensely dangerous for a variety of reasons.


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