[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

[Yorkiemom]

By the way, you mentioned a lack of funds for your medical care.

Recently, I had to have surgery. When I was back for a followup, I mentioned to my surgeon that my friend's husband had a serious hernia, which protruded about 6 inches from the abdomen. He had lost his job, and thus his health insurance and I asked if the doctor could offer any suggestions...

I was really thrilled that he was kind enough to offer his services at Medicare pricing, due to the circumstances. This made a huge difference in the family's ability to pay for surgery.

I am not sure that all doctors are so generous, but perhaps it would not hurt to ask, at least for some direction, if they are unable to offer help.

Cathie

[MelodyL]

Cathie:

Your doctor sounds like what doctors are supposed to be. How fortunate for you that you have this kind, compassionate and caring physician in your life.

Alan's been lucky in that respect also.

Sometimes you have to swim through a river of eels before you finally find the beautiful dolphin you've been searching for.

It's nice to hear about these kind of doctors.

Melody