The Erythromelalgia Association

Here is a link to the association that seem to know all about this disease.

The Erythromelalgia Association

Combo Deseases??

ok, I was able to find out what my mom has. I do not know if it is a combination of both deseases or just the one. But this one seems to fit far better than Peripheral Neuropathy.

It is called Erythromelalgia

Meds my Mom is on

I found out what my mom is taking in the way of meds.

She is on Neurontin

The other she is taking is Tegretol

This Tegretol looks especially bad. It sounds a lot worse that the disease she has. My mom needs help. I don't think she is getting anywhere with the doctors she is seeing.

Is Peripheral Neuropathy all my mom even has?

I have not done a lot of research on this, but I have done some. I did a Google search for images that are similar to my moms. I came up completely empty. I was not able to find a single picture like my mom's feet.

This made we wonder if my mom really has Peripheral Neuropathy. Perhaps she has this along with something else. Perhaps she has been misdiagnosed all these years, which might explain why every doctor she has seen has no clue.

Im going to send this blog to doctors I can find and let them look at them and my moms symptoms. Im hoping that some doctor somewhere can help.

Anyone out there that has an idea, or two, please email me or contact me so we can figure this out. God does want to heal my mom. But like so many other things in this life, he may already have provided that healing in the form of a doctor. We just need to find the doctor that has the knowledge that God has given him or her.

Why Doesnt God heal my Mom!!!!!

I am a Christian Pastor and I am bufezzleed by this. This brings up the old question of why? I know God would love to heal her, so why doesn't he?

Why does she have to live with this? If God wanted to, he could speak one word and my mom would be healed. I think my mom is a Christian, but only her and God knows the level of her faith. Some Christians love to use the "Get out of Jail Free" card when it comes to issues of people not receiving the healing that God promised us.

They accuse those that are not healed of not having enough faith for their healing. Saying to these folks that its there own fault.

I don't buy that. I'm sure there are those that this does apply to. God has a plan. Maybe healing a person at just a specific time will help others to heal, or in some way, bring God the glory for it.

As a Pastor, I know that much of the things we try to assign God blame for are our own fault.

We live in a fallen world and we fill our world with horrible chemicals and poisons. We fill our foods with poisons. We fill our soil with poisons. We even fill the very air that we breathe with poisons. I think that God has a full time job just holding back all these poisons on a daily basis from killing us.

Much of the diseases and such that we face are of our own making. I think that God does well to keep us from killing ourselves. He has to constantly clean up our messes.

I think the bottom line is that this world and the problems and diseases in it are due to us living in a fallen world. God is doing damage control. In fact, who needs Satan in all of this? We are our own worst enemy. Satan really does not have to do much but sit back and watch us destroy ourselves!

Perhaps God has to maintain some sort of cosmic Good vs Evil balance. Sort of like in the Matrix where Neo is told by the Architect that the Matrix is all about balance. Neo is that force, so the program is constantly trying to balance itself out. It does this by one side winning, then the other side. Then the pendulum swings back to the good side. Neither side ever gets much ahead of the other. Both the good and bad side have to be kept in check and in balance. Otherwise, the whole program would come crashing down and destruction would be the result.

Maybe the way the world works is not so different from the Matrix. Perhaps Good and evil have to be kept in balance. One side simply cannot get far ahead and win out over the other. If one side started winning, the world could no longer exists as it is and therefore would simply end in destruction.

Perhaps this is what happens at the end of the world. Evil leaps out in front and takes the lead. This upsets the balance and then the end comes with Good winning out over evil. Again, this sounds a lot like the final scene of the matrix.

Following that logic, there has to be an even keel of diseases and healed people on the earth. As long as we are here, till Jesus comes, the world will never be free of disease. Doesn't it seem odd to anyone else that no more have we cured one disease and another pops up to take its place??

Seems logical to me anyway. People will always, until Jesus comes, have diseases, be poor, have problems etc.

Still this is no comfort for my Mom and so many others like her.

Why cant my mom be one of them that is healed? I wonder would that mean, like that movie "The box", that someone else in the world would have to get a disease to take her place?

My Mom's symptoms as best I can write them

I really dont know what my mom goes through. Only her and God know for sure how she lives with this and what she has to endure on a daily basis. If I can, I will try to get this in her own words.

I only really know what she has told me. My mom is from the old school of grin and bear it. Her dad was a Hell-Fire and Brimstone Southern Baptist Preacher. He has past on now. (I cant help but wonder what he would think of his little girl having such a debilitating disease as this. How would be reconcile this into his faith?)

My Mom's feet are beet red. They burn constantly. She gets little to no relief at all from the pain. She has to keep her feet in ice water all the time.

She is able to keep them out of the ice water for short periods, but very short . After a while, the burning pain is unbearable and she has to put them on ice.

She has an ice pack that she takes everywhere with her. She has her feet on this pack most all the time. When she is sitting watching TV at night, she has a bucket of ice water that she has to keep her feet soaking in.

She loved to bowl a way back before this disease came. Now she cannot because she cannot wear bowling, or any other kind of shoes. They are too hot and would tear her feet apart.

She can wear sandals, but even that is for a very short time.

The closest she can get to bowling these days is on her Wii. She has had to give so much of life due to her this condition. She just cant be out of the ice water for very long.

Can you imagine living with such a disease for 30 years? Of course, it could be worse, as there are far worse diseases out there that people have to live with, but that's really not much consolation.

Maybe there is not much attention to this disease cause you can live with it, just your quality of life is pretty poor.

I don't know. All I know is that I think 30 years with such a disability is way too long. Surely, there is someone out there that knows this disease and knows of something that could help and maybe can even cure it.

My Mom's battle with Peripheral Neuropathy part 2

I will try to get my mom to write something in her own words. She is not computer literate, though she has improved a lot. She just started using computers a few short years ago. She has not had the benefit of growing up with them like so many of us.

There is so much awareness for diseases these days and so much money that is being raised for research and such. I know there is a lot on the internet about this disease, but I dont find much in the way of possible treatments, much less a cure.

According to my Mom, she has seen countless doctors and each one of them has said they could help, but so far, not one has.

She takes a cocktail of drugs. Its been so long, that its impossible to know what effect if any the drugs have. Its even possible that some of the drugs are making things worse, as drugs often do.

But she is afraid to stop taking any of these drugs for fear that it might make things worse or she will have to start all over again, which would be unbearable.

ok, I got sidetracked on this blog, so I will post her symptoms in another posting.