Going to Disability Doc-Any Suggestions ?
AnonymousFebruary 3, 2009 at 9:13 am
Hi to Everyone… It’s been awhile since I posted but I have been reading daily.
Need your advice. I received a letter from state Social Sec. office telling me that I have an appointment with an independent doctor of their choosing for
evaluation of my CIDP diagnosis. The appointment is next week. Would appreciate any advice or info on how to go into this appointment. I looked up the Dr. they are sending me to and his on-line “bio” says that he is an internist working out of Hines VA hospital, (in the Chicago area). My experience with regular doctor’s was disappointing and it took over 4 months to get to a neuromuscular disease specialist for the DX. Any advice form experiences ?
Thanks, JJM (Jeff)
AnonymousFebruary 3, 2009 at 9:48 am
Hi Jeff, Not sure if this will help or not as I have only been to a state disability dr. I filled out the paperwork, took with me all the hospital notes, tests and results, and was very to the point in my answers to the dr. during the exams be honest, try to do what is asked-if you can’t he/she will notice when you fail. For instance standing on tiptoes and walking on heels-if you can’t(like me) then you fail that test-which is a good thing. Its really not an appt to stress over in my opinion, and I’ve had 3 in the last 4 yrs. Good Luck. Take care. Nice to see you again!:)
AnonymousFebruary 3, 2009 at 10:19 am
I just went through one for the VA. I’m not sure how it came out. I was just honest. I did what I could do and what I couldn’t do I didn’t. Asked if I could bend down and pick up something the answer was I could probable bend down, but the getting back up was a hold different matter. After eight months the results of all the test etc are at the board for evaluation now. I figure if it took the eight month to collect the data, it will take them eight minutes to read it and make a decision and another eight month to fill in the forms to tell me the results of the decision. Then I can start my appeal and the whole thing starts over again. They way I’ll die before they have to deal with me or my wife. You just have to love the irony in the whole thing. The book “Catch 22” wasn’t fiction. It was reality!
Good luck and keep your sense of humor, but careful, the doctor probably doesn’t have one.
AnonymousFebruary 3, 2009 at 2:55 pm
My understanding is that once you apply you continue to get it until either they ask for a re-eval or you make a recovery. Usually there are re evaluations every few years. I think its based on the initial diagnosis. When I received mine it was in the paperwork that I would have an eval done after 18 mos but as of yet I have not been contacted after 2 years. The evaluation is done by a Dr. of their choosing. I’m not an expert but this is what I am doing.
AnonymousFebruary 3, 2009 at 7:51 pm
[B][I]may[I][B][/B][/I][/I][/B] be independent, but WHO is paying his fee?
Therefore just let him ask you questions based on what info he has ‘read’ and see where that takes you. It doesn’t pay to lie at all, but provide only the information that is asked for. Tho It likely wouldn’t hurt to provide some papers or diagnostic information about CIDP. It may just go into your file unread, but the it IS in your file?
As an internist, he/she may or may not have a full idea or appreciation of what CIDP is or does to you. So in that respect be prepared to be short and sweet about what you are NOT able to do in work and life since CIDP onset. Not to mention the pain? Emphasise how your life has suffered from this condition or disease that you never could have expected prior to getting it. Don’t forget your cane or your walker tho!
Go get ’em! Break a leg, as they say in the theatre [not in reality].
AnonymousFebruary 4, 2009 at 9:35 am
The easy question was from Joyce. They send you a questionaire each year for a “period” of time. They may have your Doctor re-assess you and send in a report, or not. I think it depends on the information you were approved on.
As to going to the independent Dr. CIDP is quite a rare disease. Most GP’s don’t know of it. Many neuro’s don’t know a lot about it. It will be important that you have a list of your impairments with you so you don’t forget any.
How far can you walk? How many steps can you go up? One step ata time? Holding the railings? How long can you be on your feet? Can you walk around your house? How do you feel after a day (8 hours) of work? What about two days?, Three days? Can you work a 40 hour week? Can you work for a month? Can you work 8 hours a day, 40 hours a week, for a year? If not, why?
Remember the original definition of “Disability” for Social Security. “Can you do ANY work?” How does your CIDP affect your ability to do ANY work.
This Doctor may not know how CIDP affects you. What about your medications? Do they cause side effects that would be dangerous in the workplace? This Doctor may never have heard about CIDP. It is up to you to tell him how this affects your ability to WORK.
Obviously, SS thinks you may have a case for yourself. They are having this Dr. validate the other Dr.s opinion. In your original application with SS, you had to list how CIDP affects you. I hope you made a copy of what you gave them. Stre4ss those points. If SS denied you at one point or another, they had to give a reason, make sure that you can answer that reason.
Like the othershave said, honesty and truth rule the day. But don’t forget that you need to fully communicate to the Dr as well. Make a list of impairments and how they affect you. That way you won’t forget any. There is nothing wrong with a list. Heck, make two copies and give him one !!
Good luck, keep positive
AnonymousFebruary 12, 2009 at 8:11 am
Hi all… I went to the Disability Doc. as planned. Long, through, exam.
We’ll see what happens… Off to see my Neurologist this morning. They’re
changing my course of treatment form IVIG to Su-medrol IVPB. Neuro muscular doc does not see an improvement with IVIG and wants to try and relieve my symptoms with the steroids. Thoughts appreciated from anyone who has gone this route ? The impression he gave me was that if/when IVIG isn’t working, they maintain you with the steroids, rather than heal your nerves. Do I have this right ? Your thoughts & ideas welcome… JJM (Jeff)
AnonymousFebruary 12, 2009 at 11:30 am
[SIZE=”4″]Your nerves will heal themselves. The steroids will help keep the disease at bay while your body does its thing. There is no medicene that can make the nerves grow. I take different vitamins & suppliments to help promote the growth of the myline. One is called “Lion’s Mane”. I don’t know what’s working,but I’ll keep up what I’ve been doing. I’m much better now than I was in 2004.:D [/SIZE]
AnonymousFebruary 12, 2009 at 12:47 pm
The nerve axons are surrounded by a substance called myelin. The myelin is somewhat layered, but it’s purpose is to facilitate signal transmission across the axon. Not every axon is myelinated, but most are, especially the peripheral nervous system. In CIDP, the immune system thinks that myelin is a “foreign invader” and attempts to destroy it. There is a lot og myelin across the entire body, so the immune response becomes quite “active”.
Your body has several mechanisms to fight this response. First, there is a type of T-Cell that destroys other T-cells that are screwing up. I think you can see a relapse-remitting cycle setting up here. Attack, attack, attack, and then the body steps in to control, control, control. Kind of like a good cop, bad cop.
IVIG acts like a “good ARMY”. It floods the body with good cops, to help take out the bad guys. Usually the muscles respond faster than sensory, so you get stronger. Eventually the good cops(IVIG) wear out (die off) and you need a new infusion.
The steroids act like immunosuppression. It makes it harder for the bad cops to keep on destroying the myelin.
In regards to myelin healing… You have things called Schwann cells. Their purpose is to replace myelin that surrounds the axons. They rebuild it layer by layer, and you have lots of Schwann cells all over your nervous system. So look at it like the bad cops destroy myelin, and the Schwann cells repair it. As with many other hierarchies, rebuilding takes longer than destroying. (You have to ask for bids, let contracts, get workers on-site, coffee breaks, etc..). Anyway, if there was no recurring damage, schwann cells could rebuild the myelin and get those nerves functioning better. In some cases, the damage done to the axon is too severe, and no amount of repair can fix it. In that case there is permanent damage. “residuals” they would be called. Something left over after all is done.
So, don’t think of the medical process as “either/or” but as a choice of different paths to the same end. If one path is impassable, try another one. Then another, etc. until you find the right way out. There is always a way out.
There are also alternative med’s that can help the body re-grow myelin, and support overall nerve health. You can research these. Most are not harmful, and can be helpful person to person.
I hope this helps.
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