Help. Does my husband have ALS?

My husband has been complaining of weakness in his left hand and arm for several years. About a year ago, he started having trouble gripping with his left hand. By summer, he could not grip a golf club. We went to the top neurologists in the city, and they started testing. From August thru December, the thought it might be a brachial plexus injury. In December, my husband's speech began to be affected. By Jan, he was having trouble gripping with his right hand. We went to another specialist, and were told it was probably ALS. My husband already had IVIg scheduled, so we went through with the treatments the first week of February. There seemed to be some improvement. It did not last. In early March, he had another 5 day course of IVIg. Although he felt better, there was no improvement of symptoms. At this point, he could no longer lift his arms up all of the way, and his speech was greatly affected. Last week, he had yet another 5 day course of IVIg. There has been no improvement. Next week, he goes on disability because he is now having trouble walking. I have been dressing him for almost 4 months. He cannot do the simplest of tasks. My question is why do we not have the ALS diagnosis? Can it really be CIPD or multi focal motor neuropathy? I don't see how it is anything but ALS. Any suggestions on how I can approach his neurologist? My husband does not want an ALS diagnosis because that makes this all real. He wants to believe he is on disability to focus on recovery. I just want the correct diagnosis so that we can utilize the resources we have available and get him the help and equipment he needs. Help!

No EMG'S have been done yet? That's probably the most important test for him to do at this point. I am not ALS expert, but that seems like the logical step.

None of us "want"an ALS diagnosis but we all want to know what we are dealing with. I was like your husband and thought if I could avoid the diagnosis it would eventually go away.

Well, it didn't, and I decided I needed to get my neurologist to refer me to Mayo Clinic and get a definitive (as definitive as possible) a diagnosed - Even after getting an ALS diagnosed I was in denial for months but discovered once I accepted the hand I was dealt the easier it is to make each day count.

Hang in there, and ask your doc for an EMG and even a referral to a specialty clinic. This is not an easy disease to name -

Ladyinn

Hi Miss. Sorry about your hubby. Trying the MMN diagnosis first and with a bit of improvement would be logical. ALS is such a bummer I can see waiting till all else fails before diagnosed'ing that. I think they should be able to go there now and then you can get help from ALSA/MDA.Time to start pushing.

AL.

My husband has had every test known to mankind - at least twice. After performing the EMG, the ALS specialist here said he was 70% sure that is what it was. After my husband had the first IVIg treatment, the specialist said he still believed it was ALS - even with the positive reaction. I don't know why our regular neurologist won't go ahead and confirm the diagnosis unless he is just humoring my husband.

I have suggested that we go to Mayo, Mass General - anywhere! My husband is fighting an ALS diagnosis so hard, he doesn't want to risk it. The really hard part about all of this is that he is a veteran and there are so many services available now. We still have two children at home, and this is putting such a needless burden on them, particularly our 15 year old son. This is all so difficult without a diagnosis and services to help. When I push, it upsets my husband so much. He feels like I am giving up on him.

You are right in your thinking about the available services. If you have no proof, you have no services for him and you all will suffer needlessly. He needs to see an ALS specialist:

TENNESSEE

MDA/ALS CENTER OF MEMPHIS MID-SOUTH
(901) 725-8920
(901) 725-8934 FAX
E-mail: [email protected]
Tulio Bertorini, M.D., Director
8095 Club Parkway
Cordova, TN 38016

MDA/ALS CENTER AT VANDERBILT UNIVERSITY MEDICAL CENTER
(615) 936-0060
(615) 936-1263 FAX
E-mail: [email protected]
Peter D. Donofrio, M.D., Director
1301 22nd Avenue, South #3603
Nashville, TN 37212

Good luck to y'all!

We were referred to Bertorini by our regular neurologist. Bertorini believes my husband has ALS, but thought we ought to try IVIg since it was already scheduled. Even with a reasonably positive response to the first IVIg treatment, Bertorini still believes that it is ALS. Because Bertorini is out of network (we are fighting that!), we went back to the regular neurologist. It is from this office we need the diagnosis. How hard should I push? I don't believe there is any real question about what my husband has. I cannot find the speech problems in any of the diseases that could be on the table. Everything else has been ruled out. We are going back to the doctor on Friday. Maybe he is just waiting to point out to my husband that there were no improvements after this 3rd IVIg treatment.

Push as hard as you can for a definitive answer. Tell them your husband is a veteran, and you need a positive DX in order for him to be treated by the VA. My husband was DX in Sept 09, but the doctors said he had it for a couple of years, and we were able to get retroactive payments from the VA. Then call 1-800-827-1000 and they will send you the paperwork you need. Then, hand deliver the paperwork to your regional office if at all possible. This is how we did it, and we were approved in less than a month. We did this without a service officer, but I would recommend contacting a PVA rep, since you may be eligible for retroactive benefits. Good luck. HUGS Lori

Thank you so much for the information! Thank you too for confirming what I know I need to do - push. This has been so hard. We have been going through tests, treatments, etc. for over 8 months. If my husband and I were the only ones in the house, it might be easier. With two kids in the house, it has been very difficult. Thank you again for the support.

Miss, so sorry that you had to find your way here for this reason. That said, I want to give you a warm WELCOME! You are now officially a CALS. [Caregiver to a person with ALS]. Not a label that any of us imagined we would be given but you will quickly discover that this forum of CALS & PALS will become your lifeline of support. In order to receive VA benefits you NEED THE OFFICIAL DX before you apply! I would explain all of this to the Neurologist-that you will have to wait the 5 months to get Medicare/SSDI and that you can not get VA Benefits until you have the diagnosed and not having the diagnosed is ruining your lives. We have a 13 1/2 year old son and I can so identify with your anguish. Melody has had a very similar experience and I am certain that she will share with you as soon as she sees your thread. How old is your Husband? Sending you Prairie hugs this morning. Kay Marie

My husband just turned 49 last week. He is starting short term disability this week. He is just too unsteady on his feet to keep going to the office. Unfortunately, his co-workers have been less than supportive in most cases. We are now battling the company to allow him to work at home until the short term disability comes through. We are having trouble getting our neurologists office to fill out the paperwork! In the last few weeks, my husband has started having trouble swallowing liquids. He chokes sometimes. I feel like we are speeding down a hill, and there is a brick wall at the end. I realize that this is all hard for my husband to accept, but we need the diagnosed! Any suggestions on how hard I can push the doctor? My husband won't go see another doctor - especially Bertorini - because, he does not want the diagnosis of ALS.

You are definitely in a difficult spot. I guess the first thing is that you need to have a heart to heart discussion with your husband. My sweet husband shares some of those characteristics-I call him the pig headed pragmatic man lolol Explain to your Husband that Denial is not a river in Egypt and that knowing significantly reduces fear of the unknown and that a diagnosed will open many financial doors that are currently closed to your family. NO ONE wants to have the diagnosed BUT if it looks like a duck and quacks like a duck it must be a duck-right?! Maybe he just does not understand that none of the financial programs will be available without the official diagnosed [Medicare-SSDI-VA-ALS Clinics etc.] Once he accepts that he truly has "something" your next step is the same heart to heart with your Dr. Explain to him the rapid decline, the cost of it financially, emotionally and mentally and that you can not access the resources that you need without a official diagnosed. Trust me, we do soul understand your journey. hugs to you.

Well, you're in a tight spot with your husband being so stubborn about this. For the sake of your children, I would say he needs a swift kick in the butt. I don't mean to be harsh, but ALS will not only affect him, it affects the whole family. Those kids are going to need support. Seeing y'all struggle needlessly because you can't access funds and programs available will cause more harm than if you were to deal with it and get with the program of living with ALS.

My husband was 47 when he was diagnosed. It was a damn hard thing to adjust to and still is. But the sooner you accept it, the better off everyone is. And by the way, we have a 9 year old. He was 6 when my husband was told it was ALS. The little guy can put a name to the disease. It's something to explain why his daddy talks the way he does and why he can't do the things other dads can do.

We hate it every minute of the day.

I wish you the best of luck in this situation. Your husband's doc also needs his butt kicked to get the paperwork going...

It probably isn't unusual to see a slight boost from an initial IVIG. If he had something that was truly treatable with it, you probably would have continued to see additional improvement. Instead, all he got was a "feel good".

I'm with pushing for a definitive diagnosed. This is no time for your husband to be stubborn. A willingness to go forward on his part can bring many benefits and less suffering on all concerned (even he stands to benefit greatly).