[julieanne43]

They originally scheduled it for the beginning of Nov but then rescheduled for the middle of Nov.I will be seeing the doc the same day so he can give me the results.

[MelodyL]

Julie:

A lot of your problems are being made worse by the stress you are enduring. Think of it, your mom had a stroke and you just posted that she is dying. You have 6 children. My god, if that is not stressful, I don't know what is.

Is there a miracle solution for you?? No. Would a bunch of xanax help you out??? Not at all. Might be a quick fix, but honestly, in the long run, meds (this does not apply to pain management by the way), but anti-anxiety stuff that people take just to cope. In the long run, they don't learn to cope, they just learn to self medicate.

I really believe that your body is telling you "take a breather, relax, slow down".

Can you do this (given the circumstances you are enduring right now)? Well, I don't know. That is what support systems are for. That is what deep breathing exercises are for. Our brains control our bodies and if we are full of tension, we can't move our necks, our legs spasm, our whole body is out of whack. Sounds like your body is really out of whack. Not that you don't actually have medical problems, of course you do. But right now, they can't be fixed because of all the stuff going on in your life.

You say your dad is living in California. He obviously can't help you right now, am I correct?? And what you are dealing with with your mom, well, I went through this 12 years ago with both parents. One died in January of 1995, the other died Christmas Eve in 1995. My son went through a glass window and had to have 75 stitches in his face. this was in 1995. I developed Bells Palsy ....yup, in 1995. 1995 was probably the worse year of my life.

I also had bladder spasms like you would not believe. No wonder I had spasms. My life was literally falling apart. I was flying back and forth from New York to Florida, to visit both parents and take care of their funerals. (by myself by the way). I had to arrange a memorial for my mother. I had to arrange all the people in the nursing home in wheelchairs to come into the big room and I took my parent's wedding album, propped it up on a table, put a big bouquet of flowers (like a memorial table). We had really no other family except her two sisters. That was the whole of the family that was represented at this memorial. Everybody else there were the residents of the nursing home. But I arranged it like everybody was there to pay their respects. Then I tried to contact a Catholic priest but he would not come. So I paid a Baptist Minister to come and conduct the memorial service.

So I did what I had to do, then I said goodbye to my father. He was the one who lived about 11 more months and died on Christmas day. In 1995.

So talk about Stress. I developed Bells Palsy in April of 1995.

Stress impacts our whole body. Makes us feel pain much more than we would normally feel it. Our muscles tighten up. Everything is not in sync.

This is what I would do. And I only suggest it because you really need someone on your side here (while you are going to all your appointments, etc.).

You have not mentioned any brothers or sisters, so I gather you are an only chld??? So it's just you, your hubby and your 6 kids, right??

I would immediately sit down with your husband and gently explain what is happening to your body. If he starts to laugh, or say something inappropriate (probably because he just doesn't understand what you are going through), you MAKE him understand. You explain "Listen, this is serious, this is what I[m going through right now, we are all a part of this family, we all have to deal with this. My mom is dying. I need your help. I need your support"

Now this will either work, or it won't. Can't do a darn thing about it if it doesn't work. But you have to take this chance. I don't know a darn thing about your marriage. But from what you stated, your health is hitting a low point and you need some immediate help here and it must start with your husband's involvement.

Try and get a few minutes (I know, it's hard with 6 kids). Perhaps when they are all done for the night and put to bed and you have some down time with hubbie. State your case, calmly, and clearly. Some men need to be made aware of what women go through. They just don't get it.

You need him now more than you have ever needed him.

Give it a try.

I'm rooting for you.

Melody

[daniella]

Hi. Welcome to the boards and I'm sorry your going through so much. This is a great support board and it is so important to have a support system. I really encourage you to talk to your husband and tell him how he can help you emotionally and how your feeling. Is there other supports too in your life? I know for me my mom has been my strength and without it I don't think I would be here. Anyhow is there a way you can take out a loan,disability insurance? I'm very new to this so I'm not as educated but maybe you can keep calling the doc to see if any early cancels. I know how scary this I live in fear and have been dealing with this for about 9 months. I agree that stress,anxiety,depression though very hard to get through make things worse. I have been working on my mindfullness and trying to stay in the day. Not so great right with that but I do think I have made progress.Sending hugs and your not alone.

[Dakota]

I agree with the others about having a frank talk with your husband. My husband loves me and would do anything for me, but I am constantly amazed that he needs to be told every little thing in detail He is unable to untuit anything. I used to think he was unsupportive, but now I know that his brain is just wired differently than mine. I have to tell him everything directly and tell him exactly what I need. Then he is very supportive.

[Aussie99]

My husband does not believe I have neuropathy because some tests have come back clear.

He thinks I have imagined all of this suffering.

I think he is in denial,but I also think he avoids my health issues because he is just as confused and probably as terrified as me at times. So we both just pretend everthing is ok, even when it's not. He is aware I was very ill with something, but the neuro told him that they couldn't find anything wrong with me. So I think he ponders back and forth between disbelief and avoidance.

I don't recommend this.

Welcome to the forum. I am sure you will find the support you need here.

[LizaJane]

Sounds like you've found a good doctor there. One thing you should not worry about is ALS. It looks completely different from neuropathy. And another reassuring thing is that neuropathy will not kill you. It may hurt like hell, but it won't kill you, and will not likely totally disable you. Most people here are able to get some control of their symptoms, and many have found a cause which, when treated, lead to total improvement. Some of us have idiopathic pn, no known cause, and for us, many have just kind of stayed at the same level, a little worse or a little better over the years.

Please don't be afraid of pursuing a diagnosis. Your doctors might be able to treat you.

Are you getting medicaid now? Do you have any insurance now?

[Yorkiemom]

I am lucky that my husband is supportive, but then he is a teaching biologist with a good understanding of the immune system and its mysteries. I am sorry that some others are not as sensitive to your health problems as they should be. I just think that sometimes it is too painful or frightening for them to have to deal with.

You can come here and be guaranteed that we will understand your concerns and fears. This is a very supportive group of people, many of whom have a lot of helpful information that may give you some direction.

When physicians are unable to find a reason for the suffering/symptoms people report to them, it is upsetting to me when patients are told there is nothing wrong. This sure doesn't help the person find answers or relief, when they are experiencing severe pain or frightening neurological symptoms...

We are raised to look up to our medical caretakers, nearly as godlike fixer-uppers. Their word has always been the "last word" and we look up to them for help, when we cannot fix ourselves. Sometimes, these people should have to experience being a patient under these circumstances...

Cathie