Hi Stephanie, the tingly pains in your mum's feet are a classic symptom of B12 deficiency. She doesn't need to be anaemic to suffer from this. It would pay to go and have a blood test done for this. If she is deficient, B12 shots will clear it up, providing it's done quickly enough. It's dangerous to leave it as it may become permanent nerve damage. Or even get worse. She might find if she is deficient, and gets treatment, that her arthritis goes too, along with many other symptoms. Well worth doing.
stephanie said:
Hello,
Iām not sure if these conditions are related or notā¦ 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 ā¦Her feet get tingly pains in themā¦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 lungsā¦They fill with mucous and he has a hard time breathing sometimesā¦He has to take enzymes.So not a nerve thingā¦Hope this helpsā¦
Woman with the electric teeth said:
Interesting, Stephanie, are those diseases somehow related then? Iāve never heard anything about that.
stephanie said:
No one in my family has TN or ATN but several members of my family have Rheumotoid arthritisā¦And one has cystic fibrosis.
Thank you for the suggestion! I will talk to her about this..Anything to help her..She has an appointment with her Rheumatologist in January.Could she take B vitamin complex or will just the shots work?
Woman with the electric teeth said:
Hi Stephanie, the tingly pains in your mum's feet are a classic symptom of B12 deficiency. She doesn't need to be anaemic to suffer from this. It would pay to go and have a blood test done for this. If she is deficient, B12 shots will clear it up, providing it's done quickly enough. It's dangerous to leave it as it may become permanent nerve damage. Or even get worse. She might find if she is deficient, and gets treatment, that her arthritis goes too, along with many other symptoms. Well worth doing. stephanie said:
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.
Hi Lisa, yes, the research, IF it was sound, could definitely prevent and possibly cure, the disease. Prevention would be easiest, as it usually is, because they could simply replace the faulty gene so TN would never develop. Repair would possibly be trickier but as TN1 is caused by wear of the myelin sheath I should imagine it's a simple (!) case of altering the gene responsible for causing the wear and - bingo! - you would have a healthy nerve again (once the sheath repairs itself). TN is only nerve damage in the sense that the myelin sheath is worn and it allows nerves to touch that shouldn't touch. Repair the sheath and you should stop the TN. But remember I'm not the researcher so my version of events is probably the equivalent of putting Mentos in a Coke bottle then using it to describe a NASA rocket launch!
Lisa said:
Youāve 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, itās 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? Iām sure there is.
Woman with the electric teeth said:
Hi Lisa, it wasnāt actually testing, per se, although that would be involved. That was my fault - I phrased it badly; Iāve fixed it now. No, he was doing genetic modification, if you will.
Hoorah, Patty! I was beginning to think we were all fated by our genes after all. I do find the genetic theory of disease somewhat depressing, so nice to give the geneticists a bit of a challenge!
Patty said:
No one in either side of my family had TN. I can go back 4 generations.
Ooh, Barbara, poor granny. It's a miracle she DIDN'T get TN. Still, it's good to have another vote for the 'no relative' pile.
barbara said:
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).
Hi Stephanie, she COULD take high strength tablets, or sublingual drops, which are far better, as they bypass the stomach, at least a bit, but if your mum has an absorption problem (i.e. her gut can't absorb B12, or does it poorly), then no, tablets won't do much good. I don't know how old your mum is, but 'elderly' people are at risk because the gut gets poorer at absorption anyway. Also at risk are vegetarians and vegans, or anyone taking proton pump inhibitors and several other medicines. They all effect the pick-up of B12 in the body. If your mum does get tested, anything below 500 is a poor result and don't be fobbed off by your doctor that it is normal. Doctors are remarkably ignorant about B12 - it's truly frightening. Also, if you do want to get her tested DO NOT take any kind of B12. This will skew the results, creating an unnaturally healthy picture. Also beware of taking folic acid, which masks B12 deficiency. Folic acid is in a lot of foods as an additive (like breakfast cereals) and masks a problem. They are also in multivitamins so don't take those either.
It would be better to test her first and see what the result is - get a copy from your doc. If it is under 500 get yourself a copy of the book "Could it be B12?" and you will have all the knowledge you need.
But yes - sorry, went on a bit there! - the shots are far preferable. They go straight into the blood so your body can use them without problem. Just Google B12 deficiency or go to any pernicious anaemia society website and you should be able to find a symptom checklist which will let you see how many of the symptoms she may have.
stephanie said:
Thank you for the suggestion! I will talk to her about thisā¦Anything to help herā¦She has an appointment with her Rheumatologist in January.Could she take B vitamin complex or will just the shots work?
Woman with the electric teeth said:
Hi Stephanie, the tingly pains in your mumās feet are a classic symptom of B12 deficiency. She doesnāt need to be anaemic to suffer from this. It would pay to go and have a blood test done for this. If she is deficient, B12 shots will clear it up, providing itās done quickly enough. Itās dangerous to leave it as it may become permanent nerve damage. Or even get worse. She might find if she is deficient, and gets treatment, that her arthritis goes too, along with many other symptoms. Well worth doing.
stephanie said:
Hello,
Iām not sure if these conditions are related or notā¦ 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 ā¦Her feet get tingly pains in themā¦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 lungsā¦They fill with mucous and he has a hard time breathing sometimesā¦He has to take enzymes.So not a nerve thingā¦Hope this helpsā¦
Woman with the electric teeth said:
Interesting, Stephanie, are those diseases somehow related then? Iāve never heard anything about that. stephanie said:
No one in my family has TN or ATN but several members of my family have Rheumotoid arthritisā¦And one has cystic fibrosis.
Thank you for the info on B 12...I will insist she gets tested..I also wanted to add something that I just read..someone suggested that hormones may be involed in TN since it affects more woman(and more older woman) than men..Just thought I'd throw that out there..:)
I don't know how it could be hormones since I think I had zero hormones when it struck! Unless that's the problem. Maybe female hormones protect women ( a bit like heart conditions) so that when they dry up it leaves us wide open, hence it striking older women. Maybe we should all be rushing off for HRT!
The instance of TN in my family is very, very high. My mom has MS so her chances of having TN are higher. She has bilateral TN and I have bilateral ATN. Hers has been in complete remission for about five years. Although she is suffering elsewhere from her MS. I don't have MS. Two MRI/MRAs all clear but that makes me nervous considering if have TN too.
I think hormones play a part as well. I seem to get flairs before and during my cycle. It seems this is something other some other women my age with TN share as well.
I wonder about blood pressure because of TN being caused by a compression. I think it makes sense that veins and arteries in people with high blood pressure would swell and could cause a compression??
Yes, you are so far the hands-down winner of the 'bad gene' pool, Jane. And it's interesting that you have MS and ATN in the mix like that. It definitely suggests there's a myelin sheath problem in the family. I should imagine, in TN anyway, that high blood pressure has to play a role in it, but think of all the people with high BP who don't develop TN. Most of them. Or people like me, who have normal BP, but still develop TN. That means there has to be something else at play - the myelin sheath degeneration - which is where your 'bad gene' or bad lifestyle choices lie.
That said, think of all the people who have bad lifestyles who don't develop TN. It does make you wonder what magical combo your family, unfortunately, has. If it does prove to be genetics, this research might be a fantastic boon for your offspring to come anyway, even if is too late for you and your ancestors to profit from!
justjane37 said:
The instance of TN in my family is very, very high. My mom has MS so her chances of having TN are higher. She has bilateral TN and I have bilateral ATN. Hers has been in complete remission for about five years. Although she is suffering elsewhere from her MS. I donāt have MS. Two MRI/MRAs all clear but that makes me nervous considering if have TN too.
I think hormones play a part as well. I seem to get flairs before and during my cycle. It seems this is something other some other women my age with TN share as well.
I wonder about blood pressure because of TN being caused by a compression. I think it makes sense that veins and arteries in people with high blood pressure would swell and could cause a compression??
Hi, Anne from Australia, loved your message, gave me a laugh, thanks for that, no I havenāt got relatives packed to the rafters either, Iām the only one I know of with this hideous disease, Iād never even heard of it before my doctor told me I had it.
Have you noticed when you talk to people they have never heard of it? I think the research into TN is dismal, you hear so much in publications or on tv about cancer research, nothing ever about TN
I look forward to the results of your tally?
Anne (hugs)
1. How would they replace faulty gene in existing and fully developed nerve?
2. Demyelination is a cause but not the only cause among causes. Multiple Sclerosis is not considered hereditary condition.
3. There are healthy nerves conducting wildly without any definable cause.
Say, somebody aged 19 went outside on 3rd Friday of October (at least it wasn't February leap year ;-)
there was strong wind to which face was exposed. Next day TN developed. Mentioned person didn't know his or her condition was TN and in the 99th year of age somebody finally diagnosed that person with TN - but no other condition whatsoever. Can we do something with the wind blowing every 3rd Friday every October?
4. Are you a medical professional who was/is/is planning doing research on TN?
Woman with the electric teeth said:
could definitely prevent and possibly cure, the disease. Prevention would be easiest, as it usually is, because they could simply replace the faulty gene so TN would never develop. Repair would possibly be trickier but as TN1 is caused by wear of the myelin sheath I should imagine it's a simple (!) case of altering the gene responsible for causing the wear and - bingo! - you would have a healthy nerve again (once the sheath repairs itself). TN is only nerve damage in the sense that the myelin sheath is worn and it allows nerves to touch that shouldn't touch. Repair the sheath and you should stop the TN. Lisa said:
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.
My Uncle also has it. Btw. In terms of hormones, I am 45, menstruating (now thatās a word I donāt say every day), have been diagnosed for almost 3 years, and my flare ups have always been tied to the same time of my cycle.
HI Anne, oh, I'm with you on the absolute lack of research. It's only surpassed by the incredible indifference of doctors - and neurologists, who should frankly either know better or care more. I'm currently engaged in a 'lively debate' with my doctor because I want to continue getting B12 shots (which I'd had to fight for) in an attempt to treat the neuralgia with that (B12 repairs myelin sheath). Because there's no book of conventional treatment for TN, or indeed any treatment other than throwing drugs at it, he's proving most recalcitrant. And I'm being polite.
Glad to welcome you to the Only One Club - adding you right now.
anne morris said:
Hi, Anne from Australia, loved your message, gave me a laugh, thanks for that, no I havenāt got relatives packed to the rafters either, Iām the only one I know of with this hideous disease, Iād never even heard of it before my doctor told me I had it.
Have you noticed when you talk to people they have never heard of it? I think the research into TN is dismal, you hear so much in publications or on tv about cancer research, nothing ever about TN
I look forward to the results of your tally?
Anne (hugs)
Hi Lisa, I have no idea how they do gene modification as I am not a geneticist. I'm afraid you'd need to ask someone more well-versed than me. I've only read one short article! I know ATN has many causes other than demyelination but this research is really aimed at TN1, i.e. classic TN. I remember Ken Casey, I think it was, saying in his video that 80-odd or 90-odd per cent of TN1 was demyelination at root. I'm not sure why you are citing MS since TN and MS are not the same disease. Just because they share similar disease manifestations does not necessarily mean they have the same cause. If it did, one would probably lead to the other, at least occasionally, and they don't. MS sufferers can get TN but TN sufferers don't develop MS. Thank God.
I'm not sure what you mean by healthy nerves conducting wildly. I'd have said any nerve "conducting wildly" was not healthy, by definition. If you care to clarify?
The weather does not cause TN so whether the wind sprung up in October or July makes no difference. Co-existence does not prove causality.
No, I'm not a medical professional. I read an article and was interested to see if this site bore out the hypothesis that TN was inherited. What we're doing here is anecdotal and as such provides nothing but an interesting theory to work with.It's is about as scientific as pinning a tail on a donkey and declaring you've invented nuclear physics.
Lisa said:
1. How would they replace faulty gene in existing and fully developed nerve?
2. Demyelination is a cause but not the only cause among causes. Multiple Sclerosis is not considered hereditary condition.
3. There are healthy nerves conducting wildly without any definable cause.
Say, somebody aged 19 went outside on 3rd Friday of October (at least it wasnāt February leap year
there was strong wind to which face was exposed. Next day TN developed. Mentioned person didnāt know his or her condition was TN and in the 99th year of age somebody finally diagnosed that person with TN - but no other condition whatsoever. Can we do something with the wind blowing every 3rd Friday every October?
4. Are you a medical professional who was/is/is planning doing research on TN?
Woman with the electric teeth said:
could definitely prevent and possibly cure, the disease. Prevention would be easiest, as it usually is, because they could simply replace the faulty gene so TN would never develop. Repair would possibly be trickier but as TN1 is caused by wear of the myelin sheath I should imagine itās a simple (!) case of altering the gene responsible for causing the wear and - bingo! - you would have a healthy nerve again (once the sheath repairs itself). TN is only nerve damage in the sense that the myelin sheath is worn and it allows nerves to touch that shouldnāt touch. Repair the sheath and you should stop the TN.
Lisa said:
Youāve 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, itās 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? Iām sure there is.
Woman with the electric teeth said:
Hi Lisa, it wasnāt actually testing, per se, although that would be involved. That was my fault - I phrased it badly; Iāve fixed it now. No, he was doing genetic modification, if you will.
Ah, you're a different Stephanie, Stephanie! I'll add you and uncle in. Just to keep up word of the day, I can say I wasn't menstruating at the time I developed TN. In fact I was well into the menopause, so I'm not sure if there is a hormonal element. Certainly poor old uncle can't claim that! But the cycle flare-ups may simply be stress levels. They certainly go through the roof at period time and, as we all know, TN just loves stress.
Stephanie Rudin said:
My Uncle also has it. Btw. In terms of hormones, I am 45, menstruating (now thatās a word I donāt say every day), have been diagnosed for almost 3 years, and my flare ups have always been tied to the same time of my cycle.
