Shocking, I hadn't thought of this

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Candie

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So much I read in just a few short lines that hit me really hard.
My husband started falling down a few years ago. They forced him off of his job. His legs grew weak but the doctor said it had to be in 3 of 4 limbs before it could be called ALS or MS. The last EMG showed it is now in both arms. His legs are withered and the tendons jut out when he tries to lift his leg. He spends most of his time in a wheel chair. They just did a biopsy taking a section of muscle from the left are, calf and removed a nerve from his foot.

I don't know what all to expect but I am afraid and I really need someone to talk to. I don't know what to look for, signs to watch for. His hands are starting to shake.

How does one go through this? I think I am failing at every turn to experience the right reactions. The things that go through my mind make me think I do not know who I really am anymore.

Is there anyone I can talk to who understands
 

TBear

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Hi Candie:
Where are you from that you would get this kind of explaination and diagnosis? Your husband needs to see a neurologist and get the appropriate testing to make the diagnosis. The biopsy and nerve removal seems a bit draconian. There are people on this site who have bulbar onset ALS and maintain control of their arms and legs! According to your doctors assessment, these people would have no access to help in their condition.
Are you seeing a neurologist... if not get a referral right away.
Good luck

T.
 

Al

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Could you tell us where you are from Candie? There may be a support group in your area. You can either download the Living with ALS binder from the site or call the regional office near you and they will send it to you. Even if your husband is not 100% diagnosed there is information in the manual you will find useful.
 

Candie

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YES OF COURSE HE HAS A NEUROLOGIST -

I think it is pretty obvious that he is seeing a neurologist. Yes he is and has been for over a year. His legs have steadily deteriorated to where now he cannot lift them if there is a blanket on them. they are very thin and very weak. The last EMG's showed that the neuropathy was moving into his arms. In the beginning they told us that it had to be in three of four members such as two arms and a leg or two legs and an arm for them to declare MS or ALS. Now the neurologist says it has progressed to both arms and both legs then he ordered a biopsy of his shoulder, calf and removed a nerve from his foot to send to a lab for testing. Even though it is now in four members they are not saying ALS or MS they are just not saying anything in the way of a diagnosis, only that it is in his arms and legs. I noticed his hands now tremble. He cannot open jars or cut a pizza with a knife or tasks of that nature. I do not know what to look for, what to do to help him, what our future is. This is frightening and what little I read of just the topic headlines was frightening. I don't know what to think or what to watch for next. I am in Ohio. :(
 

ricturn

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Re: YES OF COURSE HE HAS A NEUROLOGIST -

Candie :

Isn't this stage disconcerting ? I know how you feel - I was diagnosed in 2002. Still they are not sure ! My neurologist, Dr. Mike Strong, has given me as much as he can, but it is still unsure what I have. Is mine PLS or is it full blown ALS ? Well, maybe the next hospital clinic will tell ..............

I wish you had access to London Health Sciences , Dr. Strong is doing a fantastic job. And, I have a SUPER woman to give hope and a will, to carry-on :)

Good luck !
Richard(ricturn)
 

Marcia Speakman

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Candie, I just joined today and was going through some of the messages and read yours. I just had to reply as I am from Ohio too. My mom has ALS. Hers started with her speech and swallowing. She was just diagnosed in July and has a feeding tube already. At lest with it she is gaining weight. Her right foot is also dropping. She cracked 4 ribs last week from a fall. What her neurologist (Dr Nash Ohio State Hospital in the MDA/ALS clinic) told us when we went for a 2nd opinion was ALS is hard to diagnosed. It is more the process of elimination, and all though he can not say for sure he would feel confident in his judgement that it is ALS. Well, I accept it is ALS after all I have read and heard. I am so sorry about your husband. I love my mother, but she as lived a long life of 77 and my #1 prayer is that she goes home to God before she has to really suffer. It would be much harder to say goodbye to my husband. My mom lives with us so I am her caregiver. I would be glad to chat with you or write if I can be of any comfort. I hope you have family and friends to help you. I think it is really going to help me to read and share things with people in this group. I know there are ALS chapter support groups in Ohio but it is so much easier time wise to set here at my computer when mom is resting.
Take care and God bless you and your husband. Marcia
 

Carol Deboer

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Hi Richard and all,

I agree with you, Dr. Strong was our doctor too. He was wonderful and works endlessly to try to find a cure for als. He is full of information and his team are awesome as well. Anne, Marnie and the rest are incredibly kind and informative to every need. He gave us such comfort and gave his time to us freely. Too bad every patient cannot experience the care of Dr. Mike Strong, he is truly one of a kind. Good luck to you with your husband. It must be so hard not knowing exactly what you are dealing with. Getting second and third opinions is not a bad idea either. Keep on searching until you get concret answers. Knowledge is power.

Stay Strong, Carol
 
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