[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

[DanP]

Ya might want to go a step further and ask if your doctor accepts medicare assignment. This can save lots of bucks too. If he accepts assignment then he is agreeing that whatever medicare approves is the total amount of the bill. For instance, if he accepts assignment and then bill $100 and then Medicare only approves $80. Medicare will then pay 80% of the $80or $64 making you or your supplemental insurance liable for $16. If he doesn't accept assignment then you will be billed for $36.
None of this amounts to very much but if you had a surgeon's charge of $25000.00 then you could be out big bucks if the surgeon will not accept assignment. Since I have gone on Medicare I won't see a doctor, clinic, or hospital that doesn't accept assignment. Fortunately MOST physicians do accept assignment because so many of their patients are on Medicare and despite their griping that Medicare pays too little their practice and profits would suffer quite a bit if they didn't accept Medicare patients. Anyway, give this 'assignment' thing so thought - in a years time it will save you lots of $$$.

[julieanne43]

Hi you guys! Sorry I have not been on my legs gave out Sunday Late afternoon or evening! It is so excaserbating they work then they don't just complete weakness and rubber. But guess what my husband was there shortly after it happened,he saw the devastation in my eyes and he put me to bed! Did I mention that we also have our baby grandson? He is a beautiful 13 month old boy!! His mother decided she could not provide for him and she left him with with us in our home. It is a very sad situation also but is another subject altogether. Well all of you guys have good suggestions and before I posted this morning I talked with my husband and explained what I needed from him. He said he would try harder to be supportive!! I am fighting for social security disability. I have an attorney and we just went to a hearing before a judge in Sep. The judge wanted more updating on where I am at in my Illnesses and so he is waiting for test results before he gives us his decision. I did try to get state medicaid but they don't give it to people unless you are pregnant or as supplement to medicare. I also have 2 sisters and 1 brother. I have a sister who came here to Montana to take care of my mom because I no longer could do it. She is getting ready to go back to Colorado at the end of this month. My other sister just took my mom back to Oregon so as to be there when she passes. My mom wants to pass on in her home town and there is most of her family there. I was extremely close with my mother before her stroke and it was really hard for me when she did not know who I was afterwards! I have learned to accept that though and it was kind of like I lost her when the stroke happened. It has prepared me in a way to say goodbye to her and we will really be together again in heaven! I don't know if that makes sense to you guys. I have a hard time wording things sinse my illness! Things come out kinda backwards when I write or try to explain things now. Well getting back to siblings, I also have a brother in Oregon but we are not close unfortunately.

Melody, I agree that stress does do horrible things to us. I know when I am under alot of it it makes my illnesses much worse. The spasms that I have seem much worse and the pain! I also agree that the medications would just put off having to deal with the reality of things also.

Daniella, we are trying to get some remodeling done on our home so we can sell it. We realize having a multi level home does not work for me with my mobility problems. I have literally been stuck up in my bedroom for long periods because I can't get down the stairs safely. Plus we have equity in our home and that is the best place to get some funding for doctors and test. It is just getting the house ready to sell if you know what I mean?

Dakota, you are so lucky also to have a supportive husband because men do think differently then us! It comes natural to women to be caretakers but for them we do have to do alot of communicating to help them understand what we need.

Aussie, I feel so badly for you! To have to go through what you are going through and to do it alone is very sad!! I can understand though because I have gone it alone myself. Maybe if you also sat him down and told him what you need.Do you think that maybe he would listen?

Lizajane, I saw this same Neuro I am seeing now like 3 years ago. The first time I saw him he did not take me seriously! It was this time after so much time had passed that he listened. I think it was seeing how much I had gone down hill since then. Also when he did the Neuro exam and asked me to do the foot to toe exam I almost fell over trying to do it. Also the test where you close your eyes, the doctor had to catch me because I did fall over! It is sad that you have to deteriorate like that sometimes before they will listen!!
I am really happy though that he is taking it seriously this time around!

Dan, I will have to check into the medicare billing deal. That is a really good idea! I think if it is a really good doctor that some would be willing to do that.

Julie

[daniella]

Hi. I'm glad you have some things in the work and you talked to your husband. I know for me after I was in bed basically for 4 months my legs were like jello and very painful. I had a hard time walking to the bathroom. I have gradually builded and though I have a lot of pain now can take a 20 minute walk. Its been many months and for me and not saying you but walking through crying pain. Make sure to follow the advice of your doc though. I know for me because the pain was so bad I tried to stay off of it but I guess in my case made things worse. I had to try and this is still a process to trust what they were telling me and push through the horrible pain. I was wondering and I know you said your not close with your siblings but if you still could ask them? I'm sorry about your grandchild and that is quite a thing for you to do to take her in. I can't imagine with your pain and finances. Can anyone help with that? Where do you live out of curiosity cause maybe someone here could have a referal for you. Hang in there

[julieanne43]

We live at the far northwest corner of Montana about 15 miles from the border of Idaho. SandPoint Idaho is bout 45 min. away. We have contacted social services and they will help with medical and food assistance but that is about it. It is sad because my son recently had to put in a restraing order against the mother! She is suicidal and needs counseling but has refused to get help. It also is hard because my son just turned 18 and is trying to get his life straightened out, he just got a full time job is trying to learn how to be a father, and they are both just so young!! I know what you mean about pushing yourself with the pain, but for me my legs quit and if I dont get off them I fall down. I cried the other night and told my husband that maybe it is time for a walker!! For me that is really a hard decision because I have felt that if I did that somehow that meant I was giving in or giving up somehow!!
Sorry that it takes me so long to post I am slow slow slow!!

[MelodyL]

Hi there.

Re your beautiful grandson. This will either add stress to your day, or make it so peaceful. Grandchildren (at least I see this with all of my friends), well, it makes them a completely different human beings. My friend had a lot of trouble with her daughter. She's 27, living yet again with a different guy, and just gave birth. Well, you would think the sun has come up over the rainbow. I met my friend in the supermarket and she said "I have the baby with me this week". I thought to myself 'How can a person give up a baby for the week".?? But it seems that things today are completely different than 40 years ago.

My friend told her daughter "I'm not having the baby on Thanksgiving or Christmas so I want him for this week". The girl said "no problem" handed over the baby and my friend is in joyous moods like I've never seen. I peeked in and there was the most adorable 4 month old little boy smiling up at me. It really does make you feel better, babies, and gooing, and cooing, and just acting stupid around them. It would drop my blood pressure (and I don't even have high blood pressure). What I mean to say is, this (taking care of your grandchild), will either give you joy or and I say this with caution, because I have no idea what your situation is with the mother, it might give you more stress.

This also happened to another friend of mine. Her own daughter told her to care for the baby, promising her never to take the baby away. Well, she had the little girl for 3 years. and everybody went nuts over the kid. The grandmother never filed for guardianship (an important step to be thinking about sometimes). She figured that her daughter was in no position to be making demands so she felt safe. Well, there was no more safe.

The girl came back, took the baby and the grandmother almost lost her sanity. She should have filed for emergency guardianship. See, people don't think ahead, they think in the moment.

So I have no idea what your situation is. It might be temporary. Your grandchild is so lucky to have you in his life. And your 18 year is growing up. At least he's trying. That's good.

Like I said, this new little person in your life can give you hugs and kisses and bring down your blood pressure. Let's hope you feel well enough to put something pretty on, put the baby in a stroller and go for a walk.

The baby will smile and you'll feel better. Babies tend to do that.

So enjoy your grandchild. I wish I had one, believe me.

Melody

[daniella]

Hi, Its ok never feel rushed to reply. We all have are up and down days so we understand. As for the walker I think you need to discuss with the new doc what fits your needs. There may be alternative or the treatment may help you be stronger. I'm sorry about your family and really hope others will come to help you. Stay strong as you can and take care of you.