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Old 01-04-2012, 12:27 PM   #1 (permalink)
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Default Two months until appointment to determine ALS or MG?

My father just got his appointment scheduled for testing the end of Feb. We are concerned it is so far away. Is this normal? His symptoms are worsening. Swallowing and chewing food are getting more difficult. Need advice.

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Old 01-04-2012, 12:36 PM   #2 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Yes, unfortunately its normal for the medical community to show no sense of urgency even for terminal illnesses. If his ability to eat is hindered to the point that he is losing weight then yes, get him into his GP and talk about options. And get the GP to make the phone calls to move those appointments up. You are going to have to be persistent a lot especially if your father has rapid progression.

Best of luck to you!
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Old 01-04-2012, 02:31 PM   #3 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Thank you! We will do our best to try and get him seen sooner. His symptoms are definitely not improving.
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Old 01-04-2012, 02:41 PM   #4 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Waiting to see a top notch Neurologist can definitely be anywhere from a few weeks to a couple of months. May I ask who the appt is with?
If I understand what you are saying you are still waiting for your Father to receive a diagnosis correct? Sometimes you can get an appt faster with a private practice rather then at Emory.
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Old 01-04-2012, 02:59 PM   #5 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

The appt is with Duke ALS Clinic. He has seen his local Neuro in NC who has referred him to Duke. MRI was clear no stroke and no MS. His symptoms are characteristic of MG and bulbar onset ALS. Mainly problems with slurred speech and swallowing. Can only eat certain foods.
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Old 01-04-2012, 04:33 PM   #6 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

I have similar problems with swallowing. Foods that are dry like cereal, rice, nuts cause a back up thats hard to swallow. Take smaller bites and keep to moist foods. I also have slurred speech. I like my cereals but have to drown it with milk. Good luck.
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Old 01-04-2012, 04:35 PM   #7 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Quote:
Originally Posted by Jrwpvw View Post
The appt is with Duke ALS Clinic. He has seen his local Neuro in NC who has referred him to Duke. MRI was clear no stroke and no MS. His symptoms are characteristic of MG and bulbar onset ALS. Mainly problems with slurred speech and swallowing. Can only eat certain foods.
A two month wait for an appointment at the Duke ALS Clinic is very common.
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Old 01-04-2012, 05:47 PM   #8 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Thank you for the info. His appt was actually upped from an April date. We are very concerned with nighttime coughing jags but he also has a cold which is worsening his swallowing etc. Very scary waiting period. Limbs are good though!
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Old 01-04-2012, 07:24 PM   #9 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Our appt at Duke was also a two month wait. The 2nd Neuro we saw in August gave us the ALS Diagnosis and then referred us to Duke. Because the diagnosis came out of left field we were so stun we did not asked any questions that day. Over the weekend we make a list of all of our questions and dropped the list off and asked that the Doctor give us a call to answer these questions. One of the questions was could we pursue getting my husband into a clinical trial which at that time was the Dexpramipexole Trial. She would not call us back and had her assistance contact us and told us we needed to wait and asked Duke all of our questions.. Of course by the time we got to Duke the Trial was closed. Do not wait, be aggressive to get answers. Call your GP, Call Duke, Call the ALS Association for suggestions. ALS is not a passive disease therefore we cannot be passive about getting help.
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Old 01-04-2012, 08:37 PM   #10 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

My dad is not saying "ALS" at all yet. It's the elephant in the room. I will definitely be making calls in the morning. Bulbar onset is in the back of my mind. He definitely wants to be seen at Duke. He was told Dr. Bedlack is one of the best for MG. He is having to watch what he eats because his swallowing is so bad and sit and sleep propped up. I am hoping a timeline of symptoms described will help get him in sooner. These are adjustments he has had to make in his lifestyle just recently as symptoms with his tongue and throat worsen.
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Old 01-05-2012, 12:40 PM   #11 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

When breathing and choking are issues, he needs to be under the care of a good neuro while you wait for Duke. There are devices that can help with breathing, such as a bipap. I'm so sorry, I wish Greer were easy answers. Sometimes a doc can get appointments moved up. My neurosurgeon got me in to be seen within a month when I persisted.
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Old 01-06-2012, 11:28 AM   #12 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

I talked to Duke. They are so helpful! I am currently trying to convince my father to get a swallow study done at his local neuro. He initially declined because he thought it was speech therapy. Felt he didn't need it. I explained how they take pics of his throat and swallowing. Also, he told me he lost eight pounds. I am concerned. I asked him to go to his dr and get his swallow eval and weight checked. Maybe this will be reason to hurry his appt. Any advice? He still won't say ALS is a possiblity. So sad!
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Old 01-06-2012, 01:38 PM   #13 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Yes, encourage him to get the swallow test. It can tell a lot. Don't push him to say ALS. Let him do this at his own pace. Try to be brave and strong and positive for him. I'll be thinking of you and him. {{{BIG HUGS}}}
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Old 01-06-2012, 11:52 PM   #14 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Duke is really great. My husband's first diagnosis came in August and later verified in October by Dr. Bedlack at Duke. My husband still will not say the word ALS nor has he told his family yet. He stills works everyday although he can barely lift his arms. He stills laughs and gets excited about things so I am letting him deal with ALS in his own way. I am crying enough for the both of us. My husband let's me handle all of the doctor's appts, insurance, researching clinical drug trials and anything related to ALS.
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Old 01-07-2012, 12:50 AM   #15 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Duke has been very helpful to us also. My husband was diagnosed in August and confirmed in Oct by Dr, Bedlack. He still will not say the word ALS, talk about it nor has he told his family. Although he can barely lift his arms, he goes to work everyday, still laughs and gets excited about things. Because my husband has always been a type A personality, I think the thought of this disease overwhelms him and he needs someone to lean on. I have spent hours researching ALS, drug trials, vitamins, reading everything I can find to educate myself so I can help him by giving good advice and just being there for him. I am hoping for the best for your father.

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