Newly dignosed

[royalpizza]

My husband had just been told that he as MND:
He only has lost muscle mass in upper left arm and lats?
No other symptoms that we can tell.
Could the doctor be very very wrong?
We have gone through a range of emotions, He does not ever want to go back to the doctor! He thinks he just needs to go to the gym more? You have to know he is only 48 years young and very phycially....
Any thoughts,?

bev

 

[patricia1]

So sorry to hear about your husband Yes doctors can be wrong they arent God >I dont know if he has been to a als Clinic but he should go. any MRI of the neck and head or EMGs blood test All very important . If he does have ALS the gym is the worse thing You cant tacks the muscles and they get worse . I know his reaction is to make them stronger but with ALS its the worse thing to do.. My prays are with you all Pat

 

[liz]

Welcome Bev -

By what process was your husband diagnosed (what tests, etc.)? Has he had a second opinion by an MND specialist? If his diagnosis is sure, going to the gym won't help restore strength or muscle mass in affected areas. He'll be able to see that for himself which, assuming the diagnosis is correct, may help convince him this is real. I can't blame him for wanting to deny this is happening.

Liz

 

[royalpizza]

Thank you, I did not know weights could be a problem...But I did not see them doing any harm, I will tell my husband, but I don't think he wants to hear anything right now...He has gone from family doc..to bone doc...to a NEUROGLIST who did a mri, he wants him back next month to do another elcrtro test on muscles..
There is sooo much we don't know, I really don't know what to expect.? Like how long before it starts to spread? Is MND the same as ALS?

Bev

 

[royalpizza]

to john

Hi John,
Thank you.
Dr. Turnbull is also my husbands doctor, small world.
I don't know if this is a Appropriate question. But I am going to ask any way. How did it start with you and how long to get to this point. My husband has only lost muscle in his upper left arm and lat and other then getting tired, we really don't see any other symptoms. It started last year for him....he has put a gag order on me and I am not allowed to discuss this with any family, (he thinks Dr. Turnbull is wrong) I am just feeling sick inside and I don't know what to think?
Any thoughts and all honesty are much appriciated.

Bev

 

[royalpizza]

Hi Liz,
He first saw family Dr. Then some kind of arthrithus dr. Then a neuroglist who sent him for a MRI. When we went back he talked alot about grey matter, things dying in the spinal cord. He then told him he believed it to be MND...They also took half his blood(according to my husband) Next month he is to go back for another electro test on muscles. (thats if I can get my husband to go back)
Bev

 

[patricia1]

right now your husband is in denial We were all there Soon he will be angry and then he will except it. I didnt telll my friends and family for years I know where he is coming from. Be patient he will come around. Like I said the dr,can be wrong. Take care pat

 

[CindyM]

Hi Bev and welcome to the forum. Its' good that you found us because our members have a wealth of experience both on living with ALS and taking care of a loved one who has ALS. Most likely you'll have a lot of quesitons as time goes by. Ask anything-almost no topic is off-base and if you search the threads you will see what I mean.

When your husband is ready he might want to be seen by an ALS clinic, if you aren't already involved with one. They are experienced with this very rare condition and will have resources and information that the average docs don't. At some point he might want to register with you local ALS or MD society. They can point you both in the right direction for living with ALS.

For now, though, it is enough that you decided to learn more. I send you both my best and encourage you to reach out anytime. Cindy

 

[Icanmanz]

Hi John,
Thank you.
Dr. Turnbull is also my husbands doctor, small world.
I don't know if this is a Appropriate question. But I am going to ask any way. How did it start with you and how long to get to this point. My husband has only lost muscle in his upper left arm and lat and other then getting tired, we really don't see any other symptoms. It started last year for him....he has put a gag order on me and I am not allowed to discuss this with any family, (he thinks Dr. Turnbull is wrong) I am just feeling sick inside and I don't know what to think?
Any thoughts and all honesty are much appriciated.

Bev

Hi Bev,
I am so sorry to hear about your husband. I am so sorry for you too, sweetie, because of the way he is handling it. All I can say is right now your husband is experiencing denial, he is probably angry, too. Does he have access to the computer? Does he know that you joined this forum? Sorry for the questions, but they are very important!

I just lost my son (38 yrs) to ALS almost 2 months ago. When a person comes down with als, that individual and the family go through a lot of stages. Me, as a mom, it hit me like a train. Mine is a long story. It was not an easy road. It was hard, and very, very sad. I just joined this forum about a week ago, and wish I had done it when my son was still alive. When I dealt with my son's situation, I dealt with it on my own. My family wanted for me to see a doc for meds, and I flatly said "no!" I did a lot of crying, depression almost caused for me to lose my mind, buut I made it. I dealt with a lot. I did a lot of praying, thank God when my son was diagnosed, he called me from the doc's office, and told me, but he accepted it right then. The only thing he told me is that he wanted to live his life to the fullest, and spend a lot of time with family. Then he told me, "promise me one thing, Mom. I don't want any tears. Please accept this along with me. I see it as one of God's plans, and nothing or no one can change that." I promised him that I wouldn't cry in front of him, and I didn't.
Bev, the workout thing at the gym for someone with als is a BIG NO NO. I only hope that you will be able to talk to him. Like I said he is just having a hard time accepting this. Not all people are alike.

God bless you both. Have you told the immediate family yet? Prayers to you and yours!

xoxoxo,
Irma

 

[royalpizza]

Hi Irma,
Thank you for your kind words. I am so sorry to hear about your son. All of this is alot to take in at once. I have told my family, who live far away....but he does not want anyone to know. He knows nothing about my being on this site, or sharing with my family. He wasn't even going to go back to the doctor, but before he left for work this morning he agreed to go back and see the doctor again. You have to remember we were just told this news last Thursday.

Beverly

 

[Al]

Hi Bev. Welcome and I hope we can help you cope with what you are and will be going through. Is Dr. Turnbull at McMaster or is he just a general neurologist?
AL.

 

[Jamiet]

Did your husband even have an EMG? It seems like he's only had an MRI?

The EMG is when they stick the needles in his muscles?

If the Neruo didn't do an EMG yet, there is no way he should even be thinking MND. There are several muscle diseases.

You need to schedule an appt. at the neares ALS clinic if your in the US, if not, look up the closes Neruo specalist in neuromuscular disorders and make an appt.

Good luck, hang in there

rgds,

jamie

 

[liz]

Hi Liz,
He first saw family Dr. Then some kind of arthrithus dr. Then a neuroglist who sent him for a MRI. When we went back he talked alot about grey matter, things dying in the spinal cord. He then told him he believed it to be MND...They also took half his blood(according to my husband) Next month he is to go back for another electro test on muscles. (thats if I can get my husband to go back)
Bev

Hi Bev -

If your husband doesn't complete the testing that is recommended, he may be missing a chance to get MND ruled out. Maybe he'll go if you suggest it that way?

Liz