refusal of medical care

[law6130]

hello ... i need help from people with experience..my husband had a diagnosis of ALS on the 9-2..since then he will not go to the doctor ..he will not go have his blood work..and he says hes not going for the second diagnosis that is scheduled for this monday....he has started doing a detox (chelation) and all natural cleansing and supplimental regimin..he says he feels alot better and can turn this around...but will not go to seek medical help..I DON'T KNOW WHAT TO DO..the twitching is still going on in his legs and arms..maybe not as pronounced.but it is still a fairly constant thing..i tried to explain to him that with ALS there is an autoimmune response that has been triggered ..and even if he gets rid of heavy metals in the body the auto immune response is still there..and i asked him to please seek medical care and do the natural treatments too..he will not..im scared and dont know what to do..any suggestions or information would be greatly appreciated. .

 

[LizT]

very sorry for yours and your husbands situation. and im sorry you are feeling this way. i am a CALS, so i can only guess what is going on here. In my opinion, this sounds normal. Getting a diagnosed of ALS is more than a slap in the face. The reality that this is a fatal disease, and a lot of times, in a short time, can be too much to handle. He was just diagnosed, so he may need time to let it all process. Try to be patient with him. When you are diagnosed with a terminal illness, everything changes. He has to figure out who he is now and where he fits in this world. I will pray for him to realize that he is the same person. He is just now a person with als. Try to get in contact with the ALSA and your local chapter. they can help and give advice. and keep posting here. the people on this site are God given angels. I will keep the two of you in my thoughts and prayers.

 

[abbas child]

Hi, I'm very sorry for your husband's diagnosis, which I take it was last week? If his diagnosis is ALS, he does not have an autoimmune disease. Are you sure that was his diagnosis? If it is true, then your husband is acting somewhat normal. He's in denial, trying to find a way to reverse what is irreversible. We do that a lot of that while trying to accept such an awful diagnosis.

I see Liz has given you wise advice. Please do not worry. Your husband needs time, as Liz said. Do contact the ALS organization, find the number for your local chapter and call them--again, Liz's advice. Hugs while you process this.

 

[law6130]

thank you both for responding .... i said that about the autoimmune response because of things i have read online .... im sure that im misinformed and i know im confused and stressed right now .. .. and yes im sure the doctor said ALS ... i will find the number for the closest ALS organization and contact them ... will they talk to me ? because he will not call... i do try to support him in everything ... the natural remedies he is doing .... i massage his muscles every night ...i tell him we will live 1 day at a time ... .. i just want to do everything possible to help him with this .... thats why i wished he would seek medical help. !
Thanks Again ... LORI

 

[LizT]

Lori, you are doing everything that you can do, so try to give yourself a break (i know, easier said than done). you are showing how much you care and are being completely supportive. what more can you do? i know you feel helpless. im in the same boat. all i can tell you is to keep on supporting him, and give him time to process what is going on. Also, alot of things on the internet are incorrect when it comes to ALS. Try going on the ALSA website. you can find facts there. again, sorry you had to come looking for us, but im glad you found us. stay strong.

 

[abbas child]

Lori, we are here to help you. And I believe you can probably set up all the ALSA communication, but if a Coordinator is assigned, that person will want to see your husband. Don't worry about that now, but go ahead and get all the information. What area of your husband has shown weakness? As I see it, the only thing you can do early on is to think about what he'll need for aid, according to the area affected. And also think about your house or apartment for the long term. This isn't by any means an emergency, but rather thinking toward the future. Do you have a lot of stairs that must be climbed, or do you have a downstairs bedroom or an area which could be made into a bedroom... same for a downstairs bathroom. These are long term projects to give thought to. But again, no rush. What he's doing right now won't hurt him (but likely won't help either). Try to be as calm as possible for his sake. Read, like Liz said, the ALSA website, and read here. I will pray for your peace, and his as well.

 

[sadiemae]

Lori, Hi from another Lori. My husband was DX a yr ago this week, however the docs are putting his onset of ALS 3 yrs ago. We attributed his symptoms to other things, basically burying our head in the sand, and hoping it would go away. The thing with disease, it wouldn't have mattered if we had went in earlier. Give him a bit of time to come to grips with his DX. He does need to see his doctors, but if it takes him a couple of months to do it, it can wait. This is not a disease like Cancer, where if you had gone to the doctor earlier, it would make a difference. Good Luck!

 

[irismarie]

i am so sorry about the situation. But to be perfectly honest there is not a lot that anyone can do anyway, especially now at the beginning. Letb him take his own decisions and respect them. I am so so pissed off with people making decisions for me because now I am helpless they CAN! There is no real medication anyway. Just support him in his choices. He will realised when he needs more practical help and that is the most important issue - how to get around and do the daily necessaries.
Dont worry too much now; Give him space and time
Much much love
IRismarie

 

[law6130]

my husbands problem started in one leg a few years ago .... it cramped to the point of brusing ... and twitched to the point it looked like something alive in his leg at times .... now both legs twitch .... his feet twitch and cramp ... and his hands twitch ...and have cramped a few times .... these are very hard cramps in his body .... harder and longer than most normal cramps ... they will turn his foot completely sideways ...and they are hard to massgae out..and sometimes massaging will cause them in his feet . .. he has had a sore neck for a few months now .... when he turns his head ..... he says its a little better now ..... when they tested him and put the little needles in his leg .... he had a hard time walking for a week ..... especially after sitting for any time .... the dr. told him that he was missing muscle in the foot on his bad leg .... and the calf muscle in the bad leg is very lumpy when i massage it ... and now the other leg has a few lumps too .... today he said his shoulder was doing the popping out of joint thing .... im not sure what that means .... he is fully mobile .... but seems to tire easy ... does this sound like ALS to you? ... because he is not convinced .... and ... i dont know... because he has decided not to go back to the doctor ..... i guess at this point.... time will tell. . .

Thank you for the advise on remaining calm .... it has heped me.

My thoughts and Prayers are with you also !

 

[hopeful warrior]

Hey, Lori~

I, too, am very sorry about your husband's diagnosed. With that comes my sympathy for the changes taking place in your family. I remember feeling like I got kicked in the gut. Somewhere along the line your husband may want to see a Dr. for anti depressant, anti anxiety &/or pain medicine.

My husband is the ALS patient in our family. He had horrible cramps and also complained of "spider feelings" under his skin and in his tongue. He did not have the lumpy legs but they say everyone is different. I hope he decides to get a second opinion. There are so many things it could be.

Should it be ALS, I also recommend looking up MDA. They have a wealth of knowledge available. There are 2 spiral bound books that really helped me for several months when we first started going thru this. One is directed to caregivers, the other to the patient. They also have videos and dvd's about the stages of ALS.

I apologize for rambling. I would be glad to answer any questions or just visit with you should you so desire. Take care!

 

[TedH5]

Lori, I am sorry for your husbands diagnosis. Everyone has give you extremely sound advice. Trust me when I tell you that the sooner you get your husband to accept it th ebetter because this way you can get on with living your life one day at a time as you so eloquently put it. As far as the internet and what you have read, there is a lot of bad info out there. As you have been advised stick with the ALSA website and this forum.
As far as detox or other Natural treatments, to my knowledge they do not work. As my Dr said there is no cure as of yet. If there was everyone would be doing it. Right know and going forward you will need a lot of support. I see that you are in Alabama. Not sure how far you are from Atlanta but Emory has an excellent ALS clinic. I believe I read that Nashville does as well and there may be one in Al somewhere. There they can not only give you a second opinion but also place you in contact with all of the resources and specialists that you and your husband are going to need.
Just remember there is life after diagnosis. Stay strong and keep the faith! You and your hisband will be in my prayers. Please feel free to come here anytime for support. The people here have huge hearts and spirits and their experience and advice is extremely beneficial.

 

[Katie C]

I'm just going to repeat what everyone else has said... hard as it is, let him do this in his own time. Glen absolutely refused to believe his diagnosis at first. In fact, it took us close to two years to get a diagnosis because he would downplay his symptoms to his primary care doctor. (You'll all be interested to know that his fasciculations were caused by too much caffeine.) In his heart of hearts he knew it was true, but he had to come to grips with it on his own terms, in his own time. And as many have said.. unlike cancer where an early diagnosis is key to prognosis... a few months one way or the other will really only effect symptomatic treatment to make his life (and yours) easier. Hang in there, and try to be patient.

 

[Blubear]

Hi Lori,
I am so sorry to hear about your husbands diagnosis hun. But, I am glad to see that you have found your way here! Keep posting and asking any questions you like. We are all here for you, and it is a very tight family here, so welcome to our forum hun. Yes, as the others have stated, your husband is in denial. I call it the walking zombie stage for you too. Remember this disease is just not happening to him, its happening to you and your life too. My dad has ALS. He did the detoxing thing too. It did work to slow his symptoms down. Now, I know others who have tried it, and it didnt do anything. I personally believe that there are a whole bunch of different strains of ALS, and that is one of the reasons it is so hard to find a cure. Nobody's progression is the same. Nothing is written in stone on how he will progress, but the end result will be the same for all the PALS (people with ALS) and that is dying. There is no cure yet, but there are a lot of things being tested out there so we dont lose hope. Now hun, settle down, there is NOTHING you can do right now for him. Like the others said, more tests wont make any difference right now at all. Take a deep breath and try to relax. He is trying to have some sort of control right now, so let him have it. It takes a while for things to really sink in. My heart goes out to you in this difficult time. We will always be here if you need us!
Hugs, Kari

 

[law6130]

Thanks to everyone here for educating me and helping me understanding things.

 

[APL55]

If you have been married for any length of time you know how stubborn and full of pride men can be,we find it hard to talk about and show our feelings at times,but if we get the sniffels we turn it into something major and act like babys,but when it's something serious we tend to clam up and do the macho thing,but we all handle things differnetly,if it is ALS in time he will have to deal with it,I would love it for him to get a second opinion and be told its not ALS,but untill he decides to act on things the best thing for you to do is to continue to standby him and respect his wishes,he'll love you more for it.