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cjanderson

New member
Joined
Mar 20, 2010
Messages
4
Reason
Learn about ALS
Diagnosis
12/2009
Country
US
State
Florida
City
Crystal River
I was initially diagnosed by a neurologist in December 2009 and have been waiting to be seen for a 2nd opinion since then. The doctor with whom I made the appointment said he couldn't see me until March and then cancelled that appointment and re-scheduled for June. Are they all afraid of this disease? Is it this hard for everyone to be seen? Could it just be my insurance is bad? I don't get it. Help!
 
What were you diagnosed with? It's not clear from what you have written. If you were diagnosed with ALS by a general neurologist and then were referred to a specialized ALS/NMD clinic for a second opinion, then it is not only possible, but also likely that there would be a three to six month wait for an appointment. Too many patients and too few specialists and specialty clinics to go around, I'm afraid.
 
What makes you think your insurance may be bad?

If you don't want to wait until June, try getting in to see another specialist or try getting your name put on a cancellation list. I got an appointment moved up this way.

Can you share a little more of your history with us?
 
I thought perhaps it was an insurance issue because when I tried to get a 2nd opinion appointment with the Mayo Clinic in Florida they informed me that they do not accept my Humana insurance coverage. I was diagnosed with ALS by a Neurologist using the traditional EMG, MRI and blood checks. He suggested getting a 2nd opinion but I haven't been able to find another neurologist that accepts Humana coverage other than the one that put off my appointment for 6 months.
 
I am 61 years old and have no ALS symptoms but was diagnosed almost by accident while attempting to get a "nerve mapping" done to surgically treat a Dupuymen's issue in my left hand. That was in early December of 2009. Since then, the neurologist did a more thorough EMG and had me get an MRI to rule out any spinal cord injury and also did some blood tests. His finding was that even though I exhibit no symptoms, I definitely have ALS and should get a 2nd opinion. I'm sitting on the edge of my chair waiting to find out what this is all about but I haven't been able to find another neurologist that accepts my insurance plan so I'm waiting on the June appointment now. I just wondered if this was common to others, experiences.
 
Wow, that's a real kick in the pants. Go in for a routine pre-surgery test and come out with a really nasty surprise. You have all my sympathy, friend, and I'm surely sorry to hear that you might need to join our little family.

Don't know where you are in FL, but there appear to be three ALS clinics in FL. Mayo in Jacksonville, you already know about, so here are the other two:

Suncoast ALS Clinic
2201 Central Ave
St. Petersburg, FL 33713
Directors: Steven Cohen, M.D; Alberto Vasquez, MD
727-824-7132

KESSENICH FAMILY MDA ALS CENTER AT THE UNIVERSITY OF MIAMI
(800) 690-ALS1
(305) 243-7400
(305) 243-1249 (FAX)
E-mail: [email protected]
Ashok Verma, M.D., D.M., Director
1150 NW 14th St., Ste 701
Miami, FL 33136

Maybe one of these two clinics will take your insurance, but I imagine you'll still have something of a wait.

Good luck.
 
Hello CJ ~ my relatives tried with no luck to get an appointment with U of Florida Shands and Mayo in Jacksonville. We were having to wait what seemed like a lifetime to get an appointment. They ended up going to the University of Miami ALS Center . They were able to get seen in less than a week. Since you live in Florida, maybe they can help you too.............its worth a try anyway , right ?
 
Since you do have a DX of ALS, have you applied for SSDI? There is a 5 month waiting period for Medicare, but you should get the ball rolling now. HUGS Lori
 
How can someone being diagnosed without symptoms?
No weakness, brisk reflexes, atrophy, spacicity,...?
 
My in-laws from the Miami area died a few years ago. During the course of their decline Humana consistently provided poor service; like you often being declined at one hospital only to be referred to a poorer quality one.
 
CJ, sorry you had to find us. I hope you can get a quicker appt. We are in the Baltimore area and went to Johns Hopkins to see another doctor b/c we weren't happy with the current one. This was pre-diagnosis. It takes a good 3 - 4 months to get in with specialists. As trfogey said, you need to ask to be put on the cancellation list. I recommend that you call weekly to ask if there have been any cancellations. Anyway, my husband was diagnosed in Jan with PLS and his doctor has referred him to the ALS Clinic at Hopkins....still took 3 months to get an appt even with referral from another top doc at Hopkins. Appt is next month by the way, so I know the waiting is hard.
 
Cj, I seldom come to this thread but for some reason when I peeked in here I saw your post. I am so sorry for your diagnosed but I am glad that you found the forum! My husband was diagnosed July 09 with Bulbar Onset ALS by a ALS Neurologist. We were offered a second opinion but declined. We knew it was a correct diagnosed and going through all of the testing and hearing ALS once was enough for us. His speech is almost gone, has a PEG and will soon need BiPap. He also has severe Duputren's Disease-actually has had it for more than 20 years. I wonder if any of the other PALS have it? Maybe it is somehow a part of the entire horrible spiral of ALS? Here is a brief excert on it, "Diseases Associated with Dupuytren’s

In Dupuytren’s disease, abnormalities can occur in fibrous tissues in areas other than the palm of the hand. This is known as ectopic
(pronounced “ehk TAH pik”) disease. Individuals with more severe, rapidly progressing Dupuytren’s disease are more likely to develop these conditions. Other areas affected include:
Knuckles ( Garrod’s pads ): enlargement of the knuckles can develop before other signs
Feet ( Ledderhose disease ): changes in the fascia underlying the skin on the underside of the feet cause nodules and can lead to contracture of the toes
Penis ( Peyronie’s disease ): curvature of the penis"

Learn more about Dupuytren’s disease progression here. What is Dupuytren's Disease? | Men, Women | Causes | Ectopic Disease
I asked the Neurologist if she thought that there was any connection but she poo pooed it. Now we know that there are at least 2 PALS.
If I were you, I would take Sadie's advice and apply immediately for SSDI! Are you by any chance a VET? You will have more exposure if you post on the on thread for PALS! My advice is live for the moments and make them count.
 
I want to thank everyone for the kind responses and helpful information. It's a bit ironic on the evening of passage of a health insurance reform bill that I should be complaining about my insurance coverage but apparently others have had similar issues so I'm not alone. I particularly appreciate the two referrals to other clinics in Florida and you can be sure I'll check them out. You can also be sure that if neither of those accept my insurance my next step will be to complain to the Florida State Insurance Commissioner as I don't think a company should be able to sell policies without having any doctors signed up to be available to provide service.

As for the issue of symptoms I can only say that I have no muscle weakness or degeneration at this time. I have no difficulty swallowing. The neurologist did an EMG examination and excuse my ignorance but it may be best to describe it so you all know what he did. The first series of test were with surface patches on the skin passing an electric impulse between them through my muscle and recorded on his machine, the other was similar except that only one patch was used in conjuction with an "acupuncture" needle pierced through the skin and into the muscle. He did this on fingers and thumb of both hands, forearms, upper arms, across shoulders and then feet, calves and thighs. He said my body flunked all of those tests in every location tested. The MRI of my cervical spine indicated no damage to the spinal cord and the blood tests apparently ruled out at least some of the other potential causes for these results. Then he suggested I get in to see another doctor for a 2nd opinion and perhaps additional testing for which his office was not equiped (more comprehensive MRI, muscle biopsy or spinal tap).

None of my immediate family members have ever lived to be the age I am now so I have no way of knowing if this might run in our family and perhaps I was simply "lucky" enough to have gotten a diagnosis so early in the progression of the illness that I'll wind up being a case history guinea pig of sorts to track the progression of the illness - or perhaps further testing will find another culprit responsible for my test results. I'll just have to wait and see.

As far as applying for SSDI, I suspect that I'll have to get some confirmation from the 2nd opinion doctor before they'll accept my ALS diagnosed and I wonder how that works if I'm not actually prevented from going about my normal life without any symptoms thus far. However, when I do finally get that 2nd opinion and/or additional test results, I'll keep you all posted.

Thanks again for all your support and assistance.
 
I got this in my PM this morning. I have included my reply in the hope that it will somehow create some awareness for the individuals that are obsessed with having this disease and flood the forum with repeated posts when they have been told that they do NOT have ALS. This is exactly why I seldom ever visit this thread.

QUOTE=whatsgoingon]Hi indigosd,
In Dupuytren’s disease, abnormalities can occur in fibrous tissues in areas other than the palm of the hand. This is known as ectopic
(pronounced “ehk TAH pik”) disease. Individuals with more severe, rapidly progressing Dupuytren’s disease are more likely to develop these conditions. Other areas affected include:
Knuckles ( Garrod’s pads ): enlargement of the knuckles can develop before other signs
Feet ( Ledderhose disease ): changes in the fascia underlying the skin on the underside of the feet cause nodules and can lead to contracture of the toes
Penis ( Peyronie’s disease ): curvature of the penis

What do you mean with ' are more likely to develop these conditions? ALS, that people with one of those diseases are more likely to develop ALS?[/QUOTE]

whatsgoingon,
I did not write the article-it is copied and pasted from the link that is included. If you read the article you will see that it means that if someone has Duputren's Disease they are more likely to have additional ECTOPIC DISEASES! There is no documented correlation with ALS! I went to your wall and read your posts. You are diagnosed with BFS. Go and enjoy your life. :] NO ONE WANTS THIS DISEASE. I seldom ever go to the "Do I have ALS" thread for several reasons-1. I have a husband that is dying from this ghastly disease. 2. I do not have the time or the patience to reassure individuals that for some bizarre reason want to have this disease. 3. I am not a Neurologist. 4. I am a RN with a very developed BS Radar. 5. I question anyone's motive who will ask personal questions/send private emails and will not even post their City, State, or Country to say nothing about their age or if they are male or female. 6. Individuals that keep posting and filling up the forum and wasting the time and energy of the forum family that REALLY HAVE ALS with REPEATED complaints of "twitching" or "tired" or "my toe doesn't bend" makes the MONKEY'S very crabby. Have you ever heard, "Be careful what you wish for" or "What you believe you will make manifest in your life"? I would celebrate if my Husband had a diagnosed of BFS! The big question for you is to explore why you are obsessed with your symptoms and thinking that it may be ALS when you have had the testing done and been told that it is not ALS...? I sincerely hope that you will stop looking for ALS and go and enjoy the fact that you can EAT, SWALLOW, TALK, WALK, WHISTLE, KISS and WIPE YOU OWN BOTTOM to name just few of the things that are missing from the life of PALS.
I am sincerely sorry if this bluntness offends you but you did pm me.
 
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