Hi all,
Is anyone familiar with the drug, DES? It was used by woman to prevent miscarriages around the 1950's. It is a synthetic hormone and later they found that it caused female problems for the daughters born of the woman who took it.
I am a DES baby and in those days woman didn't know they were pregnant as quickly as now so I have no idea how long my mom took it after I was conceived.
They are still researching the medical issues that it created. I am the youngest of five and the only one that my mom took the drug with. I am also the only one in the family that has had vast medical problems.

I often wonder if any of the many problems I have pertain to that drug.
Does anyone know anything about it? I would be curious if there is any correlation and if anyone has suffered from strange maladies and was subjected to DES.

This would be the site to get some statistics started.

It is on the list of things that I will be telling the Docs at Mayo. Who knows, it may mean something to them and perhaps they have seen similar problems with woman who where exposed to it.

It would be interesting to see if anyone knows of this drug and has some input. Maybe we could help with the research and have a cure named after Neurotalk. How cool would that be??? :icon_wink:

Thanks,
Judy

Hi Judy,

Just wanted you to know I'm thinking of you and that IMHO, I do believe some of your problems stem from your spine. I, have a bad spine and some of the symptoms you describe, I have experienced.
I hope you find answers soon.
Good luck,
Linda

DES women. Both had reproductive damage and could not have children.
DES typically leads to early cancer, and non functioning or malformed
genitalia.

In males the damage was visible as a rule. In females it can be hidden, and
only found after puberty and/or with examinations.

from http://ic.ucsc.edu/~flegal/etox80e/S...s/hormone.html

I think DES has only been studied on the reproductive system of those
borne to mothers who were given DES.

Mrs. D,

I agree, the studies have been limited to the female male organs mainly. I had a ovarian cyst rupture when I was 32 and the remainder of the tube and ovary had to be removed, then had a total at 39. Fibroids, endometriosis, and cysts.

For quite a while now I have wondered if the DES has not perhaps contributed to my endocrine melt-down and some of my other problems. Hopefully with all of the info I have prepared for the docs at Mayo it may help with a more rapid diagnosis. They compare DES to the other drug that they gave to women when all those children were born with gross deformities. How sad that they used woman and unborn babies to experiment on.

It is so good to be able to bounce things of people who have all different kinds of ailments and do their research. Unfortunate that anyone on the site has to have any ailments, but what a better way to put all of the knowledge to good use.

Such big hugs to you,

Judy

I

Thanks Linda,
I appreciate the kind words and the input. I have lost the muscle mass in fat part of the outer palm just noticed yesterday. It sort of just hangs there. I think you are on the something.
Hugs to you,
Judy

Hi my helpful friends,

I picked up my x-ray results from med. records today:

mild apparent chronic compression deformities of L3 and L5

Mild degenerative disc disease primarily at the L4/L5 level

small anterolateral osteophytes scattered throughout the lumbar spine

Actually, I find this to be some of the better news that I have received lately. I see the doc next week and we will go over what I can do. The only thing that bothers me that in my on-line research. They mainly refer to the elderly (80) and I am ONLY 50.
There are so many wonderful things that are happening also and I pick something positive out of each medical adventure..................I truly believe that I am becoming a better sibling, friend and stranger; looking at the world with eyes wide open.

Plus the fact that as I back-down on my prednisone my mental clarity is returning and for that I am truly grateful. I am able to think clearer than I have in more than 3 months.

Finally..................WE CAN HAVE EVERY MATERIAL THING IN THE WORLD, BUT WITHOUT OUR HEALTH, DOES IT MATTER?

I have always been functionally ill, but the last few months have humbled me beyond belief. With each thing I endure, it increases my compassion for others and for that I am grateful.

Love to you all, and what we share and how it strengthens us.

Judy

Hi Judy,

Any numbness always reminds me of low B12. My feet can go numb so quickly. Usually it starts with my toes feeling stiff, and I can't bend them. In terms of my feet.

But stress can make my hands go numb very quickly and then it's hard to type or even use the mouse pad.

B12 usually helps quite quickly. Do you take it at all?

I'm sorry, I shouldn't really write "B12" because then people go out and buy things that say, "B12" on them. When really what's needed is the Methylcobalamin form. It works much faster and better.

I would get the 5mg ones, the 5mg lozenges. They are sublinguals. That means that even if you don't absorb B12 anymore through your disgestive system, you still get it from the lozenges because you put them under your tongue and it goes straight into your body that way. Pretty neat!

I would for sure try that.

And, if you aren't doing anything for a liver cleanse, I would look into the Milk Thistle. It's been doing great for me.

Thanks Karen,

I will try both the B12 and the milk thistle. The past few days my hand has gone for numb tingling to almost the feeling one gets when fingertips and toes thaw from exposure to the cold. It is more painful than annoying.
Boy, the appt can't get here fast enough for me.
I do see my family doc next Wednesday and then I will be able to let her know how much things have progressed with my hand and feet and we will go over the back x-rays.
Your advice does do land on deaf ears. I do sense the fact that you don't agree with the Klonipin, and I understand that. It is a harsh drug, but until they come up with something alternative, I won't go back to the pain.

hugs,
Judy

Hi Judy,
OMG, I know that "frostbite" type feeling well. So not fun.

I used to get it as a kid walking home from school in the Wisconsin cold. Not walking home so much as when I'd stand by the radiator by the front door and my hands would start to "thaw."

You will get significant improvement from methylcobalamin. Do get that kind of B12 because it works much faster and better. Some people who get the cyanacobalamin vitamin B12 pills don't notice enough difference to continue taking them.

It's not that I disagree with the pain medication you're taking... is that what Klonipin is? for pain? It's just that I know that even a lot of Ibuprofen can be hard on the liver. From experience I know that when there's huge pain it is not just excruciating, it's wearing. It just wears you down.

So I'm totally in favor of the pain killers.

But now, when I'm actually at the point where the Ibuprofen is causing me pain (I'm referring to the dental problems which the periodontist thinks were made worse by the Ibuprofen) I'm just determined to avoid Ibuprofen.

Last week I had a lot of pain and it was really testing my resolve. But I took a few of the serrapeptase. Have you tried that at all?

A family herbalist friend of mine suggested it several months ago and I was testing it out, but then I got quite sick again... I was left in the cold and dark waiting for my ADA taxi ride after taking my vote in, and that did me in.

The serrapeptase requires an empty stomach, so no eating for something like three hours before hand... and no eating for an hour after.

So when I was really sick I couldn't keep track. It sounds silly not to be able to keep track, but I have a bit of brain damage.

Last week when I had a horrid toothache from infection which got worse with stress, I took a serrapeptase before going to sleep, and another when the pain woke me about 4 a.m.

I would say it got rid of about half the pain. It really dulled it. Oh, and it also seemed to work against this piercing pain I was getting in my thoracic diaphragm.

But it might not be all right with your other medicines.

I put the email my friend sent me on my web site, and I put some of the research about serrapeptase there so people could read it.
http://health-boundaries-bite.com/Serrapeptase.html


I failed to follow through on my "study" to see if it reduced varicose veins for me the way it was said to be able to...

I'm really glad you're going to try the B12 and Milk Thistle. Look for the methylcobalamin kind of B12. There's some research that says that kind can regrow nerves. I love that, REGROW nerves.

And when you start the milk thistle start off slow with maybe one capsule a day. It releases toxins that have been trapped in the liver, and that can be a bit of a jolt. I really thought I was having my mind turn to cement, which is how it was quite a long time ago when I'd been living in hydrogen sulfide. But that went away in about three or four days.

Hi Karen,
Klonipin is not a pain med. It is in the family of bensodiazepine, which is used at times for seizure disorders, Parkinson's or as a anti-anxiety drug.
It works on the central nervous system and they have been using it to treat restless leg for a while now. Still, requip is the only one so far that is FDA approved.
I take it at bedtime, so all I know is that I can sleep pain free, so that is a good thing and also that one would have to back down quite slowly. My body is quite used to it so therefore I am sure that I would have some sort of redrawals if I just up and quit taking it.
So far in there research, something is misfiring in the brain and sending the wrong signal to the legs. That is pretty much how my sleep doc explained it.
Thanks again for your input,
Judy