Suggestions needed..

    • Anonymous
      April 26, 2007 at 11:43 am

      Friday afternoon, tomorrow, I have another disability re-evaluation. I am just coming out of another paralysis event, and can’t think or remember things beyond a 5 min span, can’t do much of anything requiring hand strength, or driving. This appt. comes at a good time for me only because I’m in this state of decline, the bad thing about it is I don’t have any time to gather all my recent tests results, hospitalizations, etc. I just rec’d notice of this re-eval this week, monday, and it will take over a week to get all tests results etc that would back up my side of things. Does anyone have any suggestions on things that will help me prove my side of this battle? I was just dx with cidp by my pcp 2 weeks ago. That is a good start except my neuro, who is also listed on my disability claim, hasn’t given a dx and is actually going by what other drs(quacks) have put in their reports-its in my head sort of things. now i’m not saying all the drs (over 15) who have seen me while i was in the hospitals, are all quacks, i’m just saying there are 3 who have never had a patient like me in their care. let me give you an example of what 2 drs have told me during my last hospital stay, 1 said there is no such thing as fibromyalgia-false and there is plenty of other drs world wide who would side with me on that subject, and the 2nd dr told me i didn’t have a deadly allergic reaction to nubaine-I just overdosed on it–if I were the one who had administered the injection to myself i could see that as a possibility, but the fact that a nurse, at my pcp’s office was the one who gave me the injection-i would have to say Wrong again you quack! and the thought of my neuro actually going by what these 2 drs wrote in their reports is really scary! i don’t see my neuro until next month-couldn’t even get in to see her this week while i’m going through another paralysis/weakness event, because she is overbooked.
      I do have my receipt from my pcp with the cidp dx on it, but other then that I don’t have anything from my last 2 hospital stays, I can print out the tests results from my 3 stays in 05 though, but current and most recent tests and reports will take the hospital 4 to 5 days to copy and get ready for me. Another thing on myside of this battle is both my pcp and my neuro agree that I can’t possibly work with this syndrome. Any and all ideas are helpful and needed.
      Just a side note-my pcp and I are thinking I have had this stuff for alot longer then 05, we are in the process of going back over my record for the last 15 plus years to compare tests results and complaints and meds results, to see if it goes along with the cidp symptomology. I did have 4 previous lps that showed other problems then what they were originally used to dx. Since I just brought this stuff to the attention of my pcp, and I have a file that is the size of 2 huge dictionaries to go thru, it will take some time to get an answer. This is not in the disability file, so it can’t be included in the re-evaluation.:rolleyes:
      Thanks in advance for any suggestions. Take Care Everyone.:)

    • Anonymous
      April 26, 2007 at 12:21 pm

      Hi Cheryl,

      Not so long ago I had a disability re-evaluation. I had things printed out, but my test-results are also to vague to cover the whole story, so the best thing I could do was honestly and earnestly tell the examiner what I am experiencing everyday. From what you have been telling us, that should make a deep impression… Don’t put on a brave face and don’t smile, as I always used to do.

      And I will repeat the advice you gave to me: believe! I will be thinking of you.:)

    • Anonymous
      April 26, 2007 at 4:30 pm

      Most places have fax machines now. I had info for Nate faxed to me or SSA.
      Its fast and they usually don’t do it a long time after you request. They can do them in less than a minute.
      You might want to try that.
      Also, if your SSA office doesn’t accept faxes and you don;t have one, lots of places will accept them for you. Office Depot, Staples, Office Max all will do that for about a dollar a page.
      Trudy, natesmom

    • Anonymous
      April 26, 2007 at 7:07 pm


      I understand how nervous the re-evaluation must be making you, especially since you are feeling so bad right now.

      The deadline for the re-evaluation is rather arbitrary. I’ll bet you could reschedule the hearing, until you have had a chance to gather the information you will need to support your case. Fax them a request for postponement, citing the fact that you have been ill and unable to gather the necessary medical informaton for the re-evaluation. You can send them a copy of the note from your pcp supporting your diagonisis and recent hospitalization as proof of this reason.

      Also, it sounds like you [U]really[/U] need a new neurologist. I’m so appalled when I see how often our forum members tell of some doctors acting as unprofessionally, as you described. I know you have seen lots of neurologists already, but clearly this current one is still not helping you, either medically or with the administrative support necessary to help your re-evaluation. You deserve better.

      I’m sorry if I seem rather “pushy” about these things, but I have very little patience when it comes to incompetence or administrative red tape. I’m finding that what works best (for me at least) is to get straight to the point.

      Cheryl, you are someone whose great attitude in the face of adversity is inspiring to me and to others. You are always willing to give someone else an encouraging word, and you are constantly working to achieve a good quality of life for yourself and for your family.

      I wish you the best, and please let me know if there is any way I can help you with this. Meanwhile, you are in my thoughts and prayers.


    • Anonymous
      April 26, 2007 at 8:20 pm

      Thanks for the suggestions, and positive vibes!!!:)
      Trudy, it actually will cost me alot of money to have my records faxed to me-i would do that but the hospitals still need the min of 3 days notice to round up my charts and then get them copied, and i would have to go to the hospital to sign a release anyway. as it is it would be next week at the earliest to get them and thats with my signed never ending release(i put that in place before i even had my first event, i use to work in this particular med records department).

      i would put this eval off until next month around the 25th, but since its not ssd, its public/state employee retirement system that i get my disability through, i can’t do that without taking the bigger chance of loosing my benefits. the eval dr only sees pts 2 days a month and his next opening isn’t until late may, which would mean a huge chance that i would lose my current benefits and would have to start all over if allowed to at all. i figured if i just explain to the dr that i am still under dr care-continuiously since the beginning, and going through another event currently, i could fax the results he needs next week or at a time i can actually physically handle doing it. i guess i would rather take my chances friday then putting it off another month.
      I’m never a dull person, my timing is impeccable!:D Thanks again for All the thoughts. 🙂

    • Anonymous
      April 26, 2007 at 8:37 pm

      Cheryl I am sorry you are going thru this right now. Just get the most important stuff to take with you at first. Explain to them that they can expect to get the information from the other sources, but they can not have them available that quickly. Don’t let this get the best of you. Keep your attitude and see the possitive that will come out of this for you! (((HUGS))

      Please don’t let them immitate you. That is what their job is. To weed out the people that are not worthy of benefits from the systems. Be patient, be professional and have your paper work organized. Show them you know how you feel and you have done your homework.

    • Anonymous
      April 26, 2007 at 9:11 pm

      Just saw this Cheryl….

      I’ve never had a re-evaluation….. I have received two or three questionaires via mail, and after filling them out I was just notified that nothing would change….. I did not have to provide copies of anything, I only had to answer the questions and give dates, places, doctors info, etc., for them to do the “legwork”.

      In fact, I have never been seen by anyone at Social Security, et. al., or any of “their doctors”.

      Do they require that YOU bring copies of hospital records, tests, etc., to the interview/re-evaluation?

      In any case, as has been mentioned:

      Regardless of how you “feel” at the time of the meeting, you need to think about and remember how you are at your worst times, then only show them [U]that[/U].

      I know someone that went for an evaluation…..she wore dirty smelly – two day old clothes that she slept in, did not shower or wash her hair or use make-up, and had someone to help her into the office, sit, stand, etc. The evaluator only saw that she had trouble paying attention, had no short term memory, and couldn’t remember any details, especially anything she may or may not have received, or any instructions, and certainly was incapable of obtaining any info or records…..and such was her mental state that she was unable to ask anyone for assistance. It was only by LUCK that someone saw her letter the day before the interview, otherwise she would have even missed it!

    • Anonymous
      April 27, 2007 at 12:05 am

      Thanks again for the support. You guys are The Best!!!:)
      with the way i am feeling i’m thinking this dr will poke and prawd until my hubby steps in and says enough! i can’t drive so my hubby is insisting on using his personal time from his job to take me. the drs’ office/eval office is in Perrysburg, which is about a 20 min drive from my house. i haven’t even gone outside the house since last weekend, let alone ride in a car for anytime. when i’m this weak its really a challange to ride, especially at highway speeds, its like riding on a roller coaster without a seatbelt. 😮 i’m taking my wheelchair just in case my legs give out. i will shower as late in the day as i can-it usually makes me soooo tired that i actually look and act like a zombie afterwards-might actually work in my favor. i have a strong positive feeling about this appt, and i’m nervous at the same time, i just hope this dr knows what residuals and codp are, and actually understands this syndrome. Opers isn’t usually as knit-picky as ss is, so hopefully things will go smoothly. i’m going to keep everyones’ advice in my mind, and all the information that has been given to others in their fights with this disability stuff. You All are going into that office with me!!!:cool: Big Hugs To All!!:)

    • Anonymous
      April 27, 2007 at 11:01 am

      Best of luck to you Cheryl, hope the ride there isn’t to much for you. Stay positive and get back with us to let us know how it all went.:)

    • Anonymous
      April 27, 2007 at 1:49 pm

      Are you anywhere near the hospitals or drs offices? If so they can get that stuff together relatively quick and have someone pick it up for you if you are unable to go yourself. I mean, when you are transfered from one hospital to another they seem to get coppies of all your records in order in a matter of an hour! I have coppies of all my records from one of the hospitals I was at in July, I dont have all my records from the one I was transfered to for August. Although if you have insurance records you can use them to. Each insurance claim will result in a copy of such being sent to you and I keep coppies of each of those in a seperate folder. If you have private insurance, most of them have a website you can go to to download and print out each of these to show proof of drs visits and hospitalizations. Government insurance like SSI or Medicare though I cant comment on though becuase I dont know how they work.

      Also, as someone said you should be able to reschedule on the grounds that you need more time to compile your paperwork. I would think you should be able to do this as long as you are not requesting an unreasonably long extension.

    • Anonymous
      April 27, 2007 at 1:52 pm

      Hi Cheryl,

      Just wanted to let you know that I’ll be tagging along with everything for that appointment.

    • Anonymous
      April 27, 2007 at 2:24 pm

      Should I wear my “I’m soo confused but I don’t know why” shirt?!:D at this point its more true then not!:confused:
      I don’t live near the hospitals, but i use to work in the med records department and i know for a fact they are SLOW at getting records copied. the reason you can get copies made for transfers is the fact that the receiving hospital has to have the paperwork at the time you arrive or the insurance won’t cover the transfer. all technical stuff. when it comes to getting records copied for dr appts it takes 3 people to accomplish that feat-and it is not viewed as important in their eyes. and to have somebody else pick them up for me would mean i would have to get a release notarized-hippa rules are carried out to the detailed end in this particular hospital. actually i can’t reschedule unless i want to loose the benefits i have now, the dr who is doing this eval only has 2 appts a month, and he doesn’t have anything until may 25th, which makes it too late to get the paperwork down to the OPERS office for their meeting and decision to either continue or stop my benefits. i wish i could reschedule, but i actually would rather just get it over with.

      well i gotta go get dressed, i’ll keep ya updated. Man, you guys are really heavy on the shoulders!:D Thanks for all the help and hugs!

    • Anonymous
      April 28, 2007 at 12:23 am

      Hey Cheryl, hope everything went well Friday. Let us know.


    • Anonymous
      April 28, 2007 at 1:52 am

      Well its done, at least on my end anyway, now to wait on the boards decision next month. the only tests that the dr thought would have been helpful to have gotten from the state were all my emg/ncv results. and he actually told me i needed drs to actually sit down and analyze them so i could get a dx, he didn’t understand why i don’t have a dx from my neuro. and he knows about cidp-maybe i should see him for a third opinion after my benefits get approved.:) the exam went good, i didn’t have to do the toe/heel walk because i’m nursing a stress fracture in my foot, but everything else is the same or alittle worse then my “norm”. i’ll let you guys know if i get to keep my disability status as soon as i know. keep your fingers crossed, no better not do that it will probably hurt you too much, just hold those 2 fingers close to each other instead.;)
      Thanks again for All the support. BIG HUGS to ALL!!!:)

    • Anonymous
      April 28, 2007 at 10:27 am

      Keeping ALL my fingers “together” for you and managing pretty well! I am glad the interview is over and done with.

    • Anonymous
      April 28, 2007 at 2:02 pm

      Seems as though it went fine for you! Keeping my fingers crossed!


    • Anonymous
      April 28, 2007 at 9:46 pm

      I know this is after the fact and I am keeping my fingers crossed for you. I was told to let the doctor or person wanting the information to request it because it would not cost me anything but if I requested it then I would have to pay. They said the person could even call for information. I know they did that once to check up information concerning me.

    • Anonymous
      April 30, 2007 at 12:54 am

      Fingers are crossed and you’re in my prayers!I just had my review and disability was continued.Hope you get positive results soon!

    • Anonymous
      April 30, 2007 at 1:40 am

      🙂 Thanks Everyone. and Congrats Lesa!:)