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Does anyone else in your family have TN - or are you the only one?


#1

Hi, I've just read an article in the TNA Quarterly Magazine about the newest Great White Hope of TN research - genetic 'modification' to alter your faulty DNA. This posits that TN sufferers have a 'bad gene' which gives them a predisposition to developing TN. So far so plausible. However, the thing I found hardest to swallow in this is that the doctor who was doing this research thought that the high incidence of TN running in families meant that bad genes were "highly likely" to be the culprit. What high incidence???

No-one in my family has had TN - except me. No-one. Not even a distant cousin thrice removed. Likewise, although I've seen a few people scattered around in various forums with a relative - singular - who also has TN, I would not have said this was common by any stretch of the imagination.

So my question is, am I wrong? Have I missed something? Do you all have relatives piled to the rafters suffering along with you?

I want to believe that this research will save me (although it seems VERY far distant right now; I'll probably be dead before it comes to fruition), but I just can't believe in genes as the cause when I see almost no evidence of it anywhere I look. How about it - anyone else in your family a sufferer?

ETA: I'm going to run a tally as we go. So far we've got the following result as of the 16th of March 2015.

8 people out of 20 with one other relative with TN, and one of these with multiple (female) relatives, all with TN. (However, two of the people with a positive family history of TN have unverified anecdotal evidence of ancestors with TN and therefore it is hearsay only)


#2

Hi, I'm 73 and no one in my family has had it so not in my family anyway. I would sure hope it's not what a horrible thing to pass on to a kiddo OOOOOOOOOOOOoooooooooooooo!!!!


#3

Hi,

I've been told my grandmother suffered from neuralgia but she died years ago so I don't know any details. I have wondered in my case about there being a genetic predisposition towards TN.


#4

No one in my family has TN or ATN but several members of my family have Rheumotoid arthritis...And one has cystic fibrosis.


#5

My maternal grandma had TN. On the left side, just like me. My neurosurgeon says it is only heriditory (sp) in a physical kind of way, I.E. we are likely to be built like our relatives, not in our genes.


#6

No incidence in the family, only I have it.

Testing costs money... and does not prevent TN from occurring or not occurring.

Once you have TN, you have to treat it somehow, so genetic testing in direction of life threatening skin diseases that could develop after certain meds is a good idea.


#7

Too right, Wheels - way to guilt-trip yourself!

wheels4legs said:

Hi, I’m 73 and no one in my family has had it so not in my family anyway. I would sure hope it’s not what a horrible thing to pass on to a kiddo OOOOOOOOOOOOoooooooooooooo!!!


#8

Ah, first one, Obsidian. Although maybe you count as a half since you can't be absolutely sure that's what grandma had, but we'll be generous and count you.

Obsidian said:

Hi,

I’ve been told my grandmother suffered from neuralgia but she died years ago so I don’t know any details. I have wondered in my case about there being a genetic predisposition towards TN.


#9

Interesting, Stephanie, are those diseases somehow related then? I've never heard anything about that.

stephanie said:

No one in my family has TN or ATN but several members of my family have Rheumotoid arthritis…And one has cystic fibrosis.


#10

You're number two, Hope. And she had it in the exact same place too - interesting. Also interesting that like Obsidian it was your grandmother. Wonder if there's some significance to that - like it skips a generation?

But I'm most interested in your neurosurgeon's comment that it wasn't genetic, only "physical". What the hell did he mean by that? Generally hereditary physical characteristics like height or eye colour are genetic, by definition. I wonder if he meant like build, i.e. a fat mother is likely to have a fat child because the child will adopt the mother's eating habits? Was this his polite way of saying your TN was a lifestyle choice, like obesity or smoking?

Hope said:

My maternal grandma had TN. On the left side, just like me. My neurosurgeon says it is only heriditory (sp) in a physical kind of way, I.E. we are likely to be built like our relatives, not in our genes.

#11

Hi Lisa, it wasn't actually testing, per se, although that would be involved. That was my fault - I phrased it badly; I've fixed it now. No, he was doing genetic modification, if you will. This is quite the vogue among medical research at the moment. You would be tested for the faulty gene and then they would tamper with your DNA to, say, give you the genes of a healthy person (or perhaps remove the faulty DNA) and thus cure you of the disease. It could also be prevented this way, before the disease developed, if you were found to be carrying the inherited faulty gene that caused TN.

Like I say, I'll probably be dead before anything like this will be viable, but I find it flawed to start with. So far we've only got two people out of six with a genetic connection, and only one and a half if you take into account that Obsidian's grandmother isn't here to verify she actually had TN.

Lisa said:

No incidence in the family, only I have it.

Testing costs money… and does not prevent TN from occurring or not occurring.

Once you have TN, you have to treat it somehow, so genetic testing in direction of life threatening skin diseases that could develop after certain meds is a good idea.


#12

First of all, 2/6 is avtually a high incidence; 33%! Consider all the illnesses in the world that may or may not be genetic, for instance cancers. Half my family on one side have breast cancer, but that does not make it a high incidence on its own. If 15 of 100 000 have TN, then 33 % is still a very low number, and of course we will be few and far between.

Secondly, my sister has it too. We are now up to 43 %… :wink: We have mentioned it to 2 neuros, neither of them were the least bit surprised.


#13

I am the fourth in my family with TN. My great grandma, my mom, my aunt and me. There are studies being conducted into the genetics of TN. I participated in one through the U of Toronto last year.

I have run across quite a few others' with this in their family. I think it is pretty rare though. Other neurological diseases seem to run in my family. We all have high blood pressure too. Just things I wonder about.


#14

Hello,

I'm not sure if these conditions are related or not.. I know my mom has alot of nerve pain from her rheumotoid arthrits. Her ear hurts and has gone to the doctor who tells her the ear is fine. Her gums hurt ..Her feet get tingly pains in them..She uses alot of icy hot. I asked if the doctors ever ask her about neuralgia but she said no. So maybe in a way its connected? My nephew has cystic fibrosis and he has trouble with his lungs..They fill with mucous and he has a hard time breathing sometimes...He has to take enzymes.So not a nerve thing..Hope this helps..

Woman with the electric teeth said:

Interesting, Stephanie, are those diseases somehow related then? I've never heard anything about that.
stephanie said:

No one in my family has TN or ATN but several members of my family have Rheumotoid arthritis...And one has cystic fibrosis.


#15

You've done no wrong Woman with the electric teeth.

To find faulty gene (considering that such gene is there), you need to test DNA. To establish that faulty gene exists and is responsible for TN you still need to test DNA and confirm your findings.

Now what doing genetic modification would mean considering that quite often TN has no cause anyone could possibly determine at all?

In leukemia, where tissue (blood) regenerates often, it's possible to use bone marrow transplant to set new colony of healthy blood cells.

In trigeminal neuralgia, is it likely to replace trigeminal nerve inside the skull anyhow?

Is it likely to repair this nerve?

In case nerve is not damaged, is attempt of wanting to repair it reasonable?

How many known degenerative (for example) diseases can now be entirely stopped in treated individual because of thorough research? Do people still suffer from degenerative diseases? Yes?

Remember that various procedures used nowadays to deal with TN are focused exactly on not repairing the nerve. TN problem is a signal problem, so is there any research on epilepsy? I'm sure there is.

Woman with the electric teeth said:

Hi Lisa, it wasn't actually testing, per se, although that would be involved. That was my fault - I phrased it badly; I've fixed it now. No, he was doing genetic modification, if you will.


#16

No one in either side of my family had TN. I can go back 4 generations.


#17

No one in my family has either form of TN. I'm the first one who got "lucky" like this...


#18

As far as i know,no one in my family has or had TN. However my grandma had all her teeth out very young,and my mum doesnt remember the reason,she says my aunty knows. Bout the only thing my family doesnt have is TN. Everything else is in the family (sighs).


#19

Hi Tineline, I didn't say 2 out of 6 was low - I was waiting for more people to chip in before making any deductions - we're aiming for good science here (!), but you push it up to 3 out of 7, so it may indeed be a genetic disease; only time will tell! Tineline said:

First of all, 2/6 is avtually a high incidence; 33%! Consider all the illnesses in the world that may or may not be genetic, for instance cancers. Half my family on one side have breast cancer, but that does not make it a high incidence on its own. If 15 of 100 000 have TN, then 33 % is still a very low number, and of course we will be few and far between. Secondly, my sister has it too. We are now up to 43 %... ;-) We have mentioned it to 2 neuros, neither of them were the least bit surprised.

#20

Hi Jane, you're the first one with multi family members so we'll have to make that note on the tally. But fourth, eh? And I note they are all female. I know TN has a much higher incidence among women anyway, but that's a real family inheritance you could do without. I don't know about the blood pressure thing. I don't have high blood pressure, I know, but I suppose if you had a inherited weakness of the myelin combined with high blood pressure those two things could be catastrophic. On the other hand, it COULD be a lifestyle problem too. If you were all eating a similar diet, which could easily be passed on simply by example, and that was causing inflammation and thus damaging the sheath, THEN you add the inherited high blood pressure, what you could actually have is inherited high blood pressure and learned eating habits causing TN when combined.

This is my problem with the genetic theory - it just seems such a leap, but let us soldier on - science must prevail!

justjane37 said:

I am the fourth in my family with TN. My great grandma, my mom, my aunt and me. There are studies being conducted into the genetics of TN. I participated in one through the U of Toronto last year.

I have run across quite a few others’ with this in their family. I think it is pretty rare though. Other neurological diseases seem to run in my family. We all have high blood pressure too. Just things I wonder about.