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Forum: New Visitors Click Here! 12-02-2009, 06:28 PM
Replies: 6
Views: 1,890
Posted By leaf
Hi Jules, I've never been to Frome, but I...

Hi Jules,

I've never been to Frome, but I have an ancestral trail to make around the Glastonbury area, which is not that far away. Chipping Sodbury is on another River Frome, much smaller, I...
Forum: New Visitors Click Here! 11-30-2009, 09:54 AM
Replies: 6
Views: 1,890
Posted By leaf
Hi Jules, I just happened to drop by again,...

Hi Jules,

I just happened to drop by again, (looking for Trigeminal neuralgia info again), anyway, I didn't have to have two tests, my son was assumed HNPP because of my positive test, and our...
Forum: New Visitors Click Here! 11-04-2009, 01:24 PM
Replies: 7
Views: 1,847
Posted By leaf
hi Freemind, and TicChick, I have HNPP. I...

hi Freemind, and TicChick,

I have HNPP. I don't often pass through these forums much these days, but I saw a few new posts when searching for Trigeminal neuralgia and HNPP.

I have found...
Forum: New Visitors Click Here! 11-04-2009, 01:07 PM
Replies: 6
Views: 1,890
Posted By leaf
Hi Jules, I have HNPP and have many of the...

Hi Jules,

I have HNPP and have many of the same symptoms. Indeed our histories are very similar. I was diagnosed as was my son, when we were sent for investigations with an ortho surgeon, for...
Forum: Charcot Marie Tooth 01-21-2008, 06:26 PM
Replies: 1
Views: 2,413
Posted By leaf
Hi, As far as I know it's not part of CMT,...

Hi,

As far as I know it's not part of CMT, fatigue does occur, but I've never heard of anyone with particular difficulties waking up. Could it be the Parkonson's Disease causing the problem....
Forum: Peripheral Neuropathy 10-25-2007, 08:17 AM
Replies: 6
Views: 1,511
Posted By leaf
hi there. The MDA (muscular dystrophy...

hi there.

The MDA (muscular dystrophy association) can often help with diagnosis, although techinically CMT, HSMN are not muscular dystrophies they are often classified as neuromuscular and often...
Forum: Hearing and Inner Ear Disorders 04-22-2007, 05:16 AM
Replies: 3
Views: 3,715
Posted By leaf
Hi Cjay, This is to test for any problems...

Hi Cjay,

This is to test for any problems with the tranmission of nerve impulses from the inner ear along the auditory nerve. The MRI is usually the method adopted these days, the ABR is the older...
Forum: Charcot Marie Tooth 04-06-2007, 05:54 AM
Replies: 4
Views: 4,683
Posted By leaf
Hi Liz From what I understand, it is...

Hi Liz

From what I understand, it is possible for CMT, or HMSN in general, to appear as a new mutation. My doctors think that I could be a new mutation as I have no family history of HNPP (the...
Forum: Charcot Marie Tooth 03-10-2007, 07:06 PM
Replies: 12
Views: 5,464
Posted By leaf
Hi Sue, great news that the vitamin c is...

Hi Sue,
great news that the vitamin c is working so well for you. There are some trials taking place in the UK using vitC, I'm not sure when they start.

I dont think it will work for me as I...
Forum: Charcot Marie Tooth 02-10-2007, 11:27 AM
Replies: 12
Views: 5,464
Posted By leaf
Hi Sarah, I hope all's well. I've not...

Hi Sarah,

I hope all's well.

I've not been around that much recently, I've been sulking a bit. Asthma and muscle weakness has been giving me a bit of a kicking. I was trying out new meds, and...
Forum: Tinnitus 02-10-2007, 11:22 AM
Replies: 11
Views: 6,747
Posted By leaf
Good luck getting your appointment fixed up. I've...

Good luck getting your appointment fixed up. I've not used Choose and Book, I had a look a while back, but the main pages wouldn't work with my OS and Browser.
I did see another system for looking...
Forum: Tinnitus 02-06-2007, 08:25 AM
Replies: 11
Views: 6,747
Posted By leaf
Hi Petra, welcome to BT. I'm another...

Hi Petra,
welcome to BT.

I'm another "tinny" brit, like you I'm used to it after 26 years.

I've passed the message on about the chat room to other Tinnies in the UK, they're mostly of the...
Forum: Charcot Marie Tooth 12-19-2006, 07:01 AM
Replies: 12
Views: 5,464
Posted By leaf
Hi sarah, I hope everything is going ok,...

Hi sarah,

I hope everything is going ok, how's little Ed getting on, still pooing for england?

I've been a bit out of sorts lately, my concentration takes quite a hit, and is more to do with...
Forum: Charcot Marie Tooth 12-19-2006, 06:46 AM
Replies: 2
Views: 3,783
Posted By leaf
hi sherry, A good place to look for CMT...

hi sherry,

A good place to look for CMT info, is the CMTAssociation,
http://www.charcot-marie-tooth.org/

they have active forums too,
or there's the yahoo groups
...
Forum: Charcot Marie Tooth 11-20-2006, 12:48 PM
Replies: 12
Views: 5,464
Posted By leaf
Re. De- and Dys- , I think it's worth noting the...

Re. De- and Dys- , I think it's worth noting the difference. But then I would... lol ;)

What are the safe limits for vitC dosage. Is there an upper limit, or is it always assumed that what's not...
Forum: Charcot Marie Tooth 11-20-2006, 07:51 AM
Replies: 12
Views: 5,464
Posted By leaf
Hi Sarah, I think the MGH chat room became this...

Hi Sarah,
I think the MGH chat room became this one, though I'm not sure. Braintalk was actually offline for most of the summer, there were hardware and software problems.

Good luck trying the...
Forum: Charcot Marie Tooth 11-16-2006, 10:05 AM
Replies: 12
Views: 5,464
Posted By leaf
hello sjj, It's quiet cos the forum has just ...

hello sjj,
It's quiet cos the forum has just reopened again after being off-line for a few month. So its a fresh start.
Not many come through here though, or stay for that matter.
I've not tried...
Forum: Charcot Marie Tooth 11-14-2006, 07:15 AM
Replies: 1
Views: 3,615
Posted By leaf
Hi Jen, I don't think you'd be bothering the...

Hi Jen,
I don't think you'd be bothering the MDA unnecessarily if you contact them. They are probably the best people and most likely to understand your problems, as they have the specialist...
Forum: Charcot Marie Tooth 11-04-2006, 08:02 AM
Replies: 3
Views: 3,166
Posted By leaf
hi there c130lady, I can't remeber a bigcabose...

hi there c130lady,
I can't remeber a bigcabose here, but I've only been viewing these foriuums for a year or two.
Have you tried over at CMTA website,
http://www.charcot-marie-tooth.org/
...
Forum: Peripheral Neuropathy 10-29-2006, 12:19 PM
Replies: 21
Views: 9,826
Posted By leaf
LizaJane, I only know what I've read on the...

LizaJane,
I only know what I've read on the Athena site. Someone in the UK asked recently what tests were available in the UK after reading about the tests in the US. Athenalabs seemed well ahead in...
Forum: Peripheral Neuropathy 10-29-2006, 08:11 AM
Replies: 21
Views: 9,826
Posted By leaf
Well it has been known for some to still have a...

Well it has been known for some to still have a diagnosis of HNPP even though genetic tests are negative, other investigations will also be required to exclude other pathological processes. And of...
Forum: Peripheral Neuropathy 10-28-2006, 04:05 PM
Replies: 21
Views: 9,826
Posted By leaf
I'm sure there are quite a few others like us...

I'm sure there are quite a few others like us with Hnpp. It's funny to hear you talk about your mother and sister dislocating their shoulders at will. I was asked about dislocations by the geneticist...
Forum: Charcot Marie Tooth 10-27-2006, 08:27 AM
Replies: 8
Views: 4,152
Posted By leaf
Holli, I left a link to this site on the PN...

Holli,

I left a link to this site on the PN forum,

http://facial-neuralgia.org/conditions/ad.html

I think Hnpp makes us quite susceptible to many types of neuralgia. Though I would imagine...
Forum: Peripheral Neuropathy 10-27-2006, 08:11 AM
Replies: 21
Views: 9,826
Posted By leaf
I've just seen a mention of this, Anesthesia...

I've just seen a mention of this, Anesthesia Dolorosa, and it sounds much like the symptoms you were describing.

http://facial-neuralgia.org/conditions/ad.html
Forum: Peripheral Neuropathy 10-27-2006, 06:06 AM
Replies: 21
Views: 9,826
Posted By leaf
I nearly fell off my chair when I read your post!...

I nearly fell off my chair when I read your post!

I don't know about any relationship between ED and HNPP, though I have heard of a few others with very lax joints, but no definite DX of ED. I...
Showing results 1 to 25 of 45

 

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