posted
Long time no see for many of you. I still lurk but haven't posted in ages. Too much going on here for me to have the time. Anyway, I finally had my SSDI hearing today but I had a question for those that have been through it. The ALJ had requested a Vocational Expert to testify against me, but he never even asked her to speak, so I wonder now if that was a good thing or a bad thing. That maybe I sucked so back he didn't need her, or I did well enough there was no use. His last comment before closing was, Mrs. McLamb, you realize that you don't "look sick" or "look disabled right?" I just answered., "I am very much aware that I don't walk around with label on me". The hearing lasted all of 30 minutes. Any feedback will be appreciated and at some point I will have the opportunity to fill everyone in on what has kept me away from posting....put it this way, the last time I posted I was newly pregnant with my son and was having my PICC Line removed and was going to stay on just orals thorughout the pregnancy. He is a sick little guy and has been after numerous surgeries including heart surgery at 7 days old, a tracheostomy and g-tube at 2months and came home from the PICU at 3 months old. He just turned 1 yr old in December.
-------------------- Angela Posts: 191 | From Benson, NC, USA | Registered: Aug 2001
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I was approved on the first review so I never made it as far as you had to.
Usually the key is medical documentation e.g. positive Lyme tests, Spect scans showing perfusion and other things like an abnormal sleep study.
The next important step is for your doctor to tie in the tests to your symptoms and why it is you can't work in a written letter.
The last thing they are given is a functional capacities questionnaire, asking how long you can stand, sit, walk each day.
So how good was your documentation? Did you work with your doctor?
You can interpret his comments in one of two ways. First, he is cruel and wanted to jam you, which hopefully isn't the case.
Second, he is going to approve you but felt the need to make an ignorant comment. In other words "Ya, you're probably disabled but I've seen much worse appearing cases."
I'd tend to believe you'll be approved cuz what kind of ALJ would be such a jerk? The key though may be your documentation.
Good luck and I hope your son feels better, perhaps he needs to be checked for Lyme if he hasn't already been checked.
Tim
Posts: 52 | From California | Registered: Aug 2005
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posted
Thanks Tim, as far as my son, I have asked repeatedly and they all tell me the same thing, there is no way possible for him to have LD just because I had it. I still persue it though, someone will get tired of hearing me and just do it.
I just wanted to add that I have an attorney whom was present at the hearing, so hopefully that helped. My records show, positive LD, abnormal MSLT (nap test) was dx with Narcolepsy, dx by a Board Certified Rheumie with Fibro among other dx's I can't think of right now due to brain fog or something . Guess I'm just tired too, long day.
-------------------- Angela Posts: 191 | From Benson, NC, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
edited: I forgot to ask, would you Angela break up your LONG paragaphs to 6-8 lines of text and DOUBLE space please. We chronic lymies of undx for decades can't read/comprehend LONG continuous paragraphs. Just edit/pencil icon your post & reply ok..thanks a million.
quote:Originally posted by TicksinNC: Anyway, I finally had my SSDI hearing today but I had a question for those that have been through it.
The ALJ had requested a Vocational Expert to testify against me, but he never even asked her to speak, so I wonder now if that was a good thing or a bad thing. That maybe I sucked so back he didn't need her, or I did well enough there was no use.
His last comment before closing was, Mrs. McLamb, you realize that you don't "look sick" or "look disabled right?" I just answered., "I am very much aware that I don't walk around with label on me". The hearing lasted all of 30 minutes. Any feedback will be appreciated.
He is a sick little guy and has been after numerous surgeries including heart surgery at 7 days old, a tracheostomy and g-tube at 2months and came home from the PICU at 3 months old. He just turned 1 yr old in December.
Angela, I've had 2 ALJ hearings; 2 different judges each ASKED voc rehab specialist questions which jobs I could do. Very unusual NOT to ask them since they were paid to attend locally or flown in from out of state like 1 of mine!
Glad to hear you had a lawyer there. Did he talk much? Did YOU/YOUR LAWYER TAPE record your hearing. You never receive a copy back NOT for years if you are lucky.
Did your PCP do a RFC, residual function capacity, on you? shows how long you can walk, stand, sit, bend, crawl, climb, use your hands, etc.
Did you have a MFC, mental F.C. done by a psychiatrist? Same type of thing.
Did your lawyer ask how long it would take for a decision? Was your lawyer from YOUR state?
30 minutes is what my 2nd one was & I won representing myself. so 30 minutes does look promising IF your drs. gave the necessary DETAILS stating why you can't work at all.
Sorry to hear about your son's extreme health problems too. When it rains, it pours. Take care & BEST WISHES FOR APPROVAL.
CHIEF ALJ told me it would be more than 2 months to arrive at a decision & NOT to call him at all! He approved in 10 days! Went back 3 of the 5 yrs. of 2 claims submitted. Approved for medicare since I had 3 yrs. wait in for 2 yr. waiting period!
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My experience at my hearing was VERY similar to yours. I was scheduled in June then cancelled because ALJ decided he did need expert MD opinion to ask questions to during the hearing.
My case got "lost" thank goodness I continued to call the state office and was finally rescheduled in October. My hearing took less than 30 minutes. The "expert" turned out to be a doc in Alabama (I think) who was at least literate enough to say that with my positive WB and review of symptoms that it was possible for lyme to re-emerge and cause the symptoms I was experiencing.
The ALJ's last words to me (and I quote) "Possibly I have grown skeptical over the years but here is a 38 yr old woman, recently seperated from her second husband, with 4 kids under the age of 16. How am I to know she isn't here to just be able to stay at home with them? But I will allow her case until Oct 2006"
Talk about cutting like a knife!!!! He did not account for the fact that my first husband died, my second was an abusive, manipulative jerk, staying with me only for the cash settlement. OR the fact that I made triple the income when I was working a Office Managers job with the most flexible hours any one could get working publicaly.
It was very clear that he had already decided to approve me, he never asked me or my atty any questions about my health, did not have a Vocab/Rehab person to review my case. My medical documentation from my physicians stood on it's own.
Sounds as though we have the same ALJ. As upset as I was with his comments at least I was approved AND I pray for him that he either retires or can sleep well at night with his pessimistic attitudes and comments. I'm sure I am not the first or last he has treated this way.
Good luck and God Bless you and your family!!!
Cheryl
Posts: 204 | From kentucky | Registered: May 2003
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Twobusymom, I'm so glad you're back. You have alot of information that will be beneficial to many in this group. I told you the nastiness was gone from this forum. I just hope some of our other lyme friends will return also. Tincup, where are you lady?
Welcome Back Cheryl!
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
i was one of the fortunate ones and got approved right away (not for lyme) several years back.
good you're back because there is so much information available to you on this site.
keep up the fight for you and your son!! you have to wear them down. you can do it.
prayers to you and your son
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I don't mean to take away from the discussion of your hearing but I'm concerned that no one is checking out your son to determine if he needs treatment for lyme.
You wrote: as far as my son, I have asked repeatedly and they all tell me the same thing, there is no way possible for him to have LD just because I had it.
Are they saying this because you were on effective treatment during your pregnancy? Did you breast feed? If you haven't already, you may want to read this and search for the term "pregnancy" to see what is deemed to be effective treatment to keep from passing the infection to the fetus. http://www.ilads.org/files/burrascano_0905.pdf
This from the CDC site states that it is proven that Lyme disease can be passed to a fetus. http://www.cdc.gov/mmwr/preview/mmwrhtml/00000569.htm "Since transplacental transmission of B. burgdorferi has been documented, it will be important to determine whether maternal infection with B. burgdorferi is associated with an increased risk of adverse pregnancy outcome."
This study was designed to examine the relationship between maternal exposure to Lyme disease and adverse pregnancy outcome. I can't tell if they actually determined if any of these mothers or children were infected or if they were included in the study simply because they were in an endemic area. You'd probably need the complete study to tell unless maybe I'm not seeing the obvious.
"The incidence of total congenital malformations was not significantly different in the endemic cohort compared with the control cohort, but the rate of cardiac malformations was significantly higher in the endemic cohort" www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve& db=PubMed&list_uids=7479280&dopt=Citation
It doesn't seem that adequate resources have been allocated to really study this whole issue of fetal infection and how it might manifest so I hope someone will listen to you and will err on the side of caution when it comes to the health of your son, especially since he is sick.
Good luck with your SS case. I'll keep my fingers crossed that you are approved. Regards, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
quote:Originally posted by map1131: Twobusymom, I'm so glad you're back. You have alot of information that will be beneficial to many in this group. I told you the nastiness was gone from this forum. I just hope some of our other lyme friends will return also.
Tincup, where are you lady?
Welcome Back Cheryl! Take care, Pam
Pam/others on the board,
Tincup is really busy tackling MARYLAND'S legislature/group on their detailed LYME & TICK BORNE bill for a TASK FORCE. She's going 1 on 1 with 1 legislature and a group of 10 others.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thanks for the info Betty. I knew Tincup was away doing very important business for us. I'm just upset that she took off from here because of a handful of trouble makers.
I'm sure her friends from here have told her how great of a job Lou & his team did on cleaning up this forum.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
That's exactly what I needed was the link to the CDC with the info provided as my ammunition. My mom also has Lyme, refuses treatment though, my daughter now 15 was sick since birth and was dx in 2001 at 11 (what a journey we took to finally be heard and get the tx).
She was on orals and then 10 months with a PICC Line, between orals and IV meds she was treated about 3yrs and she seems to be doing well since she discontinued tx.
I didn't get near as much tx, only 5 months IV and 9mths (during my pregnancy) with orals but my COBRA insurance ended and with Jonathon being so ill, I have placed myself on the back burner. Not like anyone is gonna treat at no charge, so I will sit and rot and wait.
Just edited post to remove all of what I quoted. Just makes it easier to do so.
posted
Oh, forgot to mention, I didn't breastfeed him. He has a g-tube for feeds since he has (but getting better) and rided sided facial paralysis...maybe bell's palsy, who knows at this point.
But he was Dx with CHARGE Syndrome, but no other child whom was born with a right sided facial paralysis has improved, but his is improving by leaps and bounds so hopefully he will soon be eating by mouth, we just let him taste things now just so he doesnt get a food adversion.
But with the trach his airway is unprotected so we do worry about aspiration. But he has surgery next week so we will see how his airway looks and how close we are to having the trach removed.
He has vision problems as well. But he is one little happy go lucky spunky strawberry blonde, green eyed, olive complexion boy! He does sign language since he cant talk with the trach.
-------------------- Angela Posts: 191 | From Benson, NC, USA | Registered: Aug 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Angela, My heart goes out to you and your family and I'm terribly sorry to hear that your treatment has been put on hold while you deal with these horrific issues with your son. I can only imagine how frustrating and draining dealing with all of this would be.
It may be very difficult but if there is anyway you can swing it, please have your son seen by a LLMD so that he can be evaluated and treated appropriately. I wouldn't waste precious time trying to get his current doctor's to see reason since had they briefly looked into your concerns, they would have easily seen that there are many cases that are documented by what they would consider reputable sources of infection of fetuses by Bb.
What is not known or understood are the ramificaitons of being born to a mother who is infected. There are a few studies but not many so there is much that is not known. Heart complications in newborns seem to be a focus of some of the information that I've seen and as we know, facial paralysis seems like an important indicator of a possible Bb infection. Due to all of the uncertainties, it seems that an LLMD would be better able to evaluate and treat your son for any Bb related difficulties.
If it's not possible then consider searching medline, google and other sources for information about congenital lyme disease because there is information out there that would be helpful to you and his doctor's if you have no choice but to stick with his current doctors.
I wish you and your family the best in getting the help you need to get better. Regards, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
Terry K, could you edit your post showing the web page for lyme & mothers passing along to fetus. Please break it up into 2 lines vs. 1 long one. It made the thread go SUPER WIDE where we need to toggle left/right. Many misdx chronic lymies have the problem where we can't toggle back and forth. Thanks for understanding & editing!
Angela, you quoted Terry K and the post went ALL BOLD. Could you edit/pencil icon this, and remove the BOLD markings [/B] after the originator's poster's nickname and END of quoted material. Then it's quoted but not bold. Lyme has made my eyes so super sensitive for 35 years...BOLD causes them pain for continuous paagraphs of it. Thanks for understandng & changing.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi BettyG, Thanks for pointing this out. When I view the post in IE, the link is already broken into 2 lines so you must use a different browser or larger font or some other configuration difference.
When broken into 2 lines, it does not work as a link so I'll try html to shorten the line. If this doesn't work I'll have to check into the UBB code unless someone else has a better idea.
Warm Regards, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
quote:Originally posted by TerryK:
Hi BettyG, Thanks for pointing this out. When I view the post in IE, the link is already broken into 2 lines so you must use a different browser or larger font or some other configuration difference. Warm Regards, Terry
Terry, yes, I used the LARGEST font for reading as possible due to my low vision & other vision problems! Thanks so much for shortening. We learn from each other on here.
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