I had my disability interview and they have read my symptoms. Now for them, I am going to an internal medicine doctor for my ROM, memory, attention, and health checkup for assessment of my symptoms. If that does not suit them, they will send me too a psychologist. Already you all know where this will be going. I will probably be in the coo coo house.
Just to let you all know, I have horrid sensory perceptual impairments along with brain fog, deperson/dereal, sensory feedback problems. I guess, cant feel bathroom needs clearly (the urge or going with both elimination channels) is not an excuse not to go to work, not feeling the ground beneath my feet, limited body awareness and bumping into things or dropping things, and not knowing what the heck is wrong with me as I feel no sickness or body problems should not be an excuse to go to work.
THe representative even said they would assess my impairments to see if I could have some vocational training. Spare me, if I could drive and think, I would work.
I wanted to say, let me train you on my strategies to survive this horrible thing.
Did anyone else have difficulties with getting disability. Is going for other assessments a bad sign?
I shared with the representative, I have been to an neurologist who said virus and that it maybe in my mind. An infectious disease doctor who treated me for 3 months for lyme. Now I have an LLMD for the past 9 months.
I am not even going to a Physical therapist as I have limited mobility in my shoulder but can't tell them if it hurts or is it joint or muscle.
Oh well otherwise doing the survival and keeping busy thing. thank you for listening.
Barbara
Posts: 167 | From USA | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I think you should get an evaluation by a LL neurotogist.
this link will tell you more. Sorry, I'm just too tired to say more now.
As your LLMD if he know the best ENT or neurotogist to do vestibular testing for inner and middle ear / perceptual function.
(But if a ear doctor want to give you steroids, that should NOT be done due to lyme.)
I was dx with "severe sensory dysfunction" among other vestibular stuff. the tests also stated " show CNS impairment"
Some of the tests can tell if the problem is with the ear system or the brain. I'm trying to get away from my computer for a while but this should help you - and also go to the VEDA link and look up all the symptoms for vestibular disorders, it is amazing.
Lyme patients frequently have vestibular impairment but, when lyme is treated, that often gets better. For now, if you can get vestibular assessment, that might help you get some documentation.
I strongly advise to NOT mention depersonalization. Anyone with any amount of vestibular trouble will have that sort of unsettling, unreal feeling but it can be attributed to the ears.
If you use some of the other terms, you will get a psych. label that will stick forever.
posted
First question, is this for social security disability or another long term disability policy either through work or a private policy?
Makes a big difference in what is required to prove disability.
Also, if you don't mind answering, what is your age? The younger you are the harder it will be to win.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
If it is for SS disability, sending you to other doctors is not necessarily a bad thing. They would have given a first denial that you would have had to appeal without sending you to anyone if they thought that your claim did not have merit.
If it is for disability through your employer, I am not sure as to process.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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bettyg
Unregistered
posted
yes, barbara, we need more info and then we've got some outstanding info especially on SSDI !!
took me 5 yrs. of hell to get mine 3 yrs. ago; but i didn't have the info i put together and others shared personal experience. we've got good info and i'll tell you where it's located after we get more needed info.
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posted
would love to know about info gathered on disability.
short version- my job/training/degree is medical. now with zapped brain- not safe for me to have other lives in my care. met with what we thought was atty. later to find out was just a clerk/ data entry. called the firm after 2 mo. and was told get letter from LLMD but was not specific enough about why cant work even sedintary job (sedentary nurse?? seriously??)
so, they put my file to the side and are not representing me. very upset with how this started. the person i met with had me sign all kinds of papers from them to get medical info, and file ssd claim and that was not true i found out later.
so, will follow this thread....info/help//what do you do for this????
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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bettyg
Unregistered
posted
my3boys,
go to SUPPORT, and look at the top posts for MINOUCAT'S post on disability.
read thru all of that .. personal experiences, etc.
i've posted special forms/letters from conniemc, who represents folks at ssdi hearings & gathering things as a NON-LAWYER.
if you use the wisdom collected there and have supportive drs. you should have a fairly easy job of being approved by DOCUMENTATION GALORE.
in fact, i suggest you just print off minou's info so you can study it over and over.
would you, family members, or friends be able to put this together and represent yourself at the beginning by having a thorough file.
keep track of ALL HOURS SPENT ON THIS BY EVERYONE INVOLVED, and note that in there also.
time for shut eye here! hope this gives you a good start ok!
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bettyg
Unregistered
posted
i'd fire them; send them a certified letter and send copies of your letter to your local SS office IF they started the proceedings for you.
you don't want them getting money they don't deserve for NO WORK THEY DIDN'T DO!
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posted
Dear Barbara, I recently applied for SSI, but am not holding my breath at this point. I really have no faith in the government giving a crap. In our state, it is virtually impossible to get the help you need. It is not unusual for people to make as many as a minimum of three attempts before finally getting disability. The entire situation is very frustrating.
Dear bettyg, Thank you for the information! I am going to look that up. We need all of the help we can get! Dad is on unemployment, and our budget is tight with his medications and my mother's. Applying is only some of the exhaustive process. Everything is always so long and drawn out.
posted
Thank you all for your response. I know it was going to be difficult with my type symptoms. Now I realize nothing with this disease is easy.
This is for social security disability. I had my initial intake was in February and this call was from the vocational training representative.
What sparked my call to her was that my LLMD did not feel comfortable filling out the mental/cognitive form which started off with "DSM III axis" I knew this was for a psychiatric diagnosis and questioned it to the vocational representative. She said there is a medical umbrella and a psychiatric umbrella.
She then shared about the appt. with their doctor. They will get me a taxi to the appt too.
I did asked her why was I going to an internal medicine doctor to test my cognition. Why not a neurologist (useless too or maybe because I had a report already); she could not tell me that.
She said if that did not get me approved then it is the psychologist. I did share with her that making up these type of symptoms sound coo-coo but they are true and I would be happy to share with her info on temporal parietal lobe impairments.
I do know that with the medical HIPPA guidelines, I will be asking for a copy of the internal medicine report too.
I asked if I was going to get neuropsy testing. I don't think she fully understood what I was asking.
I submitted a report from an ENT that documented lyme, A infectious disease doctor that treated me for 3 months with diagonsis lyme, and an LLMD.
I have not gone to a psychologist yet as the depersonalization/sensory has left me void to answer the question, "How do you feel"
I make copies of all medical stuff related to this disease. I keep records of my LLMD email responses too.
Keebler: Thank you for that info. I am deaf in one ear and asked the representative if I had to go to get another audiologist eval. She said no but deafness in one ear is not a reason for disability for working.
I did not want a psy label and I am not putting that down for others who have it. THe LLMD put it nicely in a letter; depression and anxiety are a manifestation of the lyme disease. It is not a primary diagnosis.
Seibertneurolyme: I am 46. I have been working in the health field for 20 some years.
Bettyg: Thank you for the info!!! I hope you had a well deserved break.
My3boys: I gathered all my medical reports and gave them to the intake interviewer. I gave them the letter from the infectious disease doctor of why I could not work (in the short term) My LLMD did provide a letter too.
Feelfit: thank you for thinking the positive. I appreciate that.
JIn: I hope this info helps.
My employer has been very supportive.
Kindly barbara
Posts: 167 | From USA | Registered: Jul 2008
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posted
I've been on ss disability since 1988. But at the time I thought I had chronic fatigue syndrome. Would it help to get a lawyer?
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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aiden424,
It makes very little difference if you are currently receiving SSDI benefits. They are not that interested in dx labels but in function, anyway. You can add documentation at your next review date, if you wish.
Review are every 1-3 years.
I tried to get them to change my dx code with my first review as I then had the lyme positive data. They said they would not change it but continued under the balance disorder dysfunction.
=====
For those just now applying,
Local lyme and CFS support groups should have names of attorneys who are more educated in all this. I would advise against getting any atty who is not at least very CFS literate. LL is best.
posted
Dear Barbara, Yes, the information helps. It is greatly appreciated. I know how frustrated you are. This is such a daunting process. I am 20 years younger than you are, and cannot get regular disability since I only had a part-time job for a few months before becoming so ill as a teenager.
Dear Keebler, The thread was very useful. Thank you for the link! I took it and made a Word file out of it. Now I can refer back to it anytime I want to. Fortunately, I do have an attorney on my side already who deals with this sort of thing.
posted
My comment was that maybe it was easier to get ssdi with a cfs diagnosis, or maybe it was easier years a go. Maybe a lawyer would help Barbara now.
[QUOTE]Originally posted by Keebler: [QB] -
aiden424,
It makes very little difference if you are currently receiving SSDI benefits. They are not that interested in dx labels but in function, anyway. You can add documentation at your next review date, if you wish.
Review are every 1-3 years.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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I'm only into my third month of the process and I am so wiped out from trying to remember the things they want to know.
I've paid into FICA for 10 out of the last 15 yrs. and they took my money, and now I need it because Lyme and PTSD and Chronic Fatigue make it impossible to work.
Darn it, if I could answer all this stuff, I'd be working....Grrrrrrrr.
Tried to make a cup of tea tonight and tried to put the cap of my waterbottle on the tea kettle. Sheesh...Why don't they just send someone to live with us for one week and then they would think, "How the heck are they doing it?"
I sometimes think they are trying to kill me with questions and paperwork so they don't have to give me the money I gave them.
Talk about a rock and a hard place! As if our nervous systems haven't taken enough of a beating. The gov. sure runs at a snails pace.
Hang in there and we'll all get thru this together. Peace & Prayers.
Betty..Your so right, the post on disability has been so very usefull to me. Wonderful guidance. Much appreciation to all who have put it together. Muchas Gracias. Is that right? I'm German and Irish!!
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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bettyg
Unregistered
posted
you are all welcome! we can help you win if you follow our suggestions of what we did to win!!
lisas was just approved this week, and her bank acct. had $$$ in it; that's how she found out; no letter received yet!
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