When is the ALS diagnosis confirmed?

So my dad has had an initial diagnosis for ALS. However, no one has actually documented this. I know it is still early but I am trying to stay ahead of the curve in getting prepared and getting the necessary assistance and durable equipment he may need.

We are getting a 2nd opinion from an ALS specialist, however the EMG is not for a few weeks, and they are doing all of the initial tests over again, which is fine.

So, my questions are:

-Once you have the final diagnosis, do you need to get it in writing for insurance companies, ALS foundations, etc?

-Do they actually make a guess as to what form or onset he has? I have not been able to get a clear answer on this.

His speech is fine, his voice has been changing, fasiculations are present all over, he started out with back trouble and then drop foot. Now he can walk, slowly, and can not breath well laying down (sleep studies still in the works). He has lost 30+ lbs in the last 9 months. He can still swallow well, but his appetite is nearly non-existent.

I know the doctors are doing their best, but I certainly feel the communication could be better. Anyone have any thoughts about any of my ramblings? ;-)

Raul

Re: So when and how do they tell you.......

Diagnosis could be more conclusive, communication with the specialists could be better. A plan for treatment and treatment itself could be more successful. Financial assists could be easier to get. Mechanical assists could be more reasonably priced. Disability could be more readily available. A name for what's going on could be more easily decided, and the prognosis more exact. Caregivers could be more plentiful in number and with better attitudes....I think using a crystal ball might give more answers than our doctors. After we are gone, the story can be better told of what did happen, but while it is happening there are so many unanswered questions. We all get more support coming here than anywhere else. The care and concern we have for each other and the camaraderie helps more than anything. Your dad has you so he is very fortunate.

Re: So when and how do they tell you.......

Raul,

Regarding your questions...You'll need to get a letter from the doctor confirming his diagnosis for insurance purposes. If this involves Social Security Disability also, you'll need a list of all the doctor's your dad has seen along with a list of all medications he has taken or is taking currently (they will require all this information at some point while applying for benefits). We had all of our ducks in a row, and Mom was approved within 2 weeks. Many will tell you they waited MUCH longer. With ALS, once you're approved for Social Security, you are automatically enrolled in Medicare...she had her card within 2 weeks. We didn't need any sort of documentation when we contacted our "local" ALS Chapter. We found their website online and emailed a couple of questions to them. It wasn't a week later they sent us a hospital bed, bedside commode, and power wheelchair. We would've been lost without all their help...they are such a great resource!

As far as which onset he has, it sounds like the spinal form...limbs being effected first. Mom's started the same way. With the bulbar form, speech and swallowing are the first to show signs of weakness. Hopefully some of the other PALS here will correct me if I'm wrong.

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Raul, I agree with Chris (also with Marjorie!), and the coming EMG will tell the doctors, and you and your dad where he is shown to be having the effects, or damage. You should know that day (at least that's my experience). I realize that Upper Motor Neuron is discovered differently, but not a problem, with how you describe your dad. The doc will tell you what he observes. Then you contact the ALSA, who didn't require any proof from me, but sent out a "social worker" or a Rep. who is the person who is knowledgeable about me. She covers my area of their territory, and there is no "choosing" her. Mine, however, is wonderful. She walked through the house, talked about the requirements for a good ramp. She gave me her email addy and I told her whatever I'd like to borrow and to try, while she also offered suggestions. When you have your diagnosis, then you contact the MDA, but don't worry--their help, while important isn't nearly as immediately important as the ALSA's.

The way the ALS assoc. works is to help with problems as they arise. They didn't require any "onset" proof as to where. They're treating symptoms and how to live with them as easily as possible. The Neurologist who does give your father his diagnosis will be sending that code to the insurance. You know how the receipt we get from doctors always has a code or several for our diagnoses being treated. If it's similar to my experience, the neurologist will contact or give you the means to contact a pulmonologist for breathing problems and beginning assessments. It was suggested by my ALSA rep. when I was diagnosed that I request a "nurse coordinator" within our insurance company as my disease is not considered treatable. I did ask and get one.

Hopefully your father will be asked about his wishes in attending an ALS Clinic, where all the disciplines are covered in one long day. In my case and I think this is pretty common, the patient is placed in a room. Seen by the neuro, tested for breathing, seen by the pulmonologist, the PT, OT, Speech Therapist (who also covers swallowing), a dietitian...who all come to the patient's room. Even an owner of an equipment store was there. (excuse me while I growl.) At this point, I believe the problems with communication are much less. Everyone is together, more or less, and they are talking to you, your dad and to one another. Oh, my ALSA Rep has been to the ones I've attended and she keeps great notes, and asks follow-up questions.

I wish your father the best care. He is blessed indeed to have you on his team, Raul. God Bless, Ann

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Raul, one other thing occurs to me. You and your Dad would do well, when he is emotionally ready, to have a serious discussion about an Advance Directive. The earlier he can contemplate this and know what he really wants in the way of palliative care vs. life saving care, the better for everyone. The Neuro I saw at first told me that he usually brought it up at the third visit. But to not discuss it and then fill it out--in either direction, whether to resuscitate or not, it's simply much harder not to have had that determined. It can be heartbreaking for the family to not know the wishes of their loved one.

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the best advice i can pass on is #1 get a wheel chair, takes about 4 months to receive and by the time you think you need one its too late #2 talk about quality of life #3 raise as much money as you can now medicare and private insurance are of no use for at home care and he'll need around the clock care. #4 research tracheostomy, #5 peg tube

Re: So when and how do they tell you.......

Hi,

I guess I have to disagree a bit. The time between now and the second opinion will go very slow and then very fast. I was DX on Oct 31. I asked if I had a second choice besides ALS and was told no. But the Nerologist wanted me to go to the University of Mich ALS clinic for a second opinion. I got that appointment on Dec 7, 2006. We told everyone it wasn't time to worry until we knew for sure. I did stop working and went on Long Term Disability November 11, 2006, just in case. The second opinion was a differential Diagnosis of atypical ALS or Multifocal Motor Neuropathy. These are very different diseases but MMN can mimic ALS. After a year or so it was for sure MMN.

I write this to give you another idea of outcomes. This is a very scary time and please know you are in the hearts of minds of people here. I really don't know if I could have done anything prior to the second opinion to get ready but I just rested a lot. I wish you well. Peg

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Peg, I'm so glad for you and the MMN diagnosis! I had been given that as a probable diagnosis, and was shocked when the EMG showed ALS. I think that until the next EMG is done on Raul's father, and there's a definite diagnosis, it's still a good idea to learn about ALSA and how to contact the local chapter.

And I do really believe in having first discussions, followed by filling out Advance Directives; they can always be changed later.

A primary care doctor can order a shower bench (sturdy) or a chair with a back for showering if needed, now. I would wait for the other equipment, however, Raul. If he does have ALS, he needs equipment which is suited to that disease.

Blessings and peace while you wait,
Ann

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Ann, I agree with you. We were very hopeful that it would be MMN instead of ALS. So hopeful, my husband had three IVIg treatments between February and April. However, I did contact the ALS Association in January when ALS went on the table. I am so glad that I did.

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Hi Ann

May I know how is your condition now ? How you write in this forum whcih what equipment ? My mom is likely an ALS patient I'm quite worry about her on how to communicate with her. Thanks.

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I still type, using a wireless keyboard on my lap in the wheelchair, or at a hospital bed table on a laptop...which weighs too much for my lap. Look for a post by JoelC, who has a website telling how he communicates--he cannot use his hands. So sorry about your mother!
Ann

Re: So when and how do they tell you.......

Hi Ann. Thanks for your reply.
so for you it seem you have a slow progress of ALS or it's normal since I noticed that you were diagnosed since sometime in 2007 which is already 3 years. Or you have any tips on how to slow the progression of the conditions ?

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I am blessed and between a rock and hard place. I have diagnosed mucle weakness/atrophy and clonus. I have had full body mri, emg's, blood tests from toxins, chemicals hiv, htlv, spinal tap, somatosensory, pulmonary function and still have no diagnosis yet i see my neuro more than my coworkers. I am lucky because i still have use of all my abilities, i am pretty sure my doc wont say als until that time comes.