Anyone out there on Disability ?

    • Anonymous
      February 16, 2011 at 1:03 am

      I’m just curious , is anyone out there that has been diagnosed with CIDP / GBS gone to disability ? I’ve continued to work up until Sept 2010, @ that time I was laid off of my job, due to ” no work “. Diag’d with GBS in 2002, then diag’d w/ CIDP shortly there after, toward the end of 2002. Then diagosed with [COLOR=”Red”]MGUS & now CLL- Chronic Lymphocytic Leukemia[/COLOR] in 2008. I suffer with ๐Ÿ™ muscle spasms & muscle cramps in the back of both of my legs, to the point that I actually cry when my husband rubs the knots out of the muscles. Was wondering IF anyone suffers with the same ? & what have you done to help this get better. I currently take 40mg daily of Baclafen, and so far it’s not really stopping it. It’s so nice that there is a place that we can actually talk with others that understand exactly how/ what we’re feeling.

      Janice B

    • Anonymous
      February 16, 2011 at 10:22 am

      Morning Janice.
      I asked this question several weeks ago. Look at my post under gbs adult. I received about 5 responses. I am on short term disability until June and then, if my condition does not change, plan on long term disability insurance and appling for Socal Security disability .

    • Anonymous
      February 17, 2011 at 4:30 pm

      While I’ve not been diagnosed with CIDP, I’ve been diagnosed with other things which are far harder to “document” in a disability court…Fibromyalgia, Chronic Fatigue, Myofascial Pain Syndrome, 8 herniated discs, Peripheral Neuropathy, Meniere’s Disease, Inflammatory Osteoarthritis and possibly Rheumatoid Arthritis. (whew…) I started coming here a couple years ago, when I thought that I, too, had CIDP. I continue to post sometimes, on topics that I think I have a justifiable basis in.

      All that said, my advice would be to find an attorney that specializes in SSDI. Most, in my experience, work for a share of your back payments…in Utah it’s usually 25%. They will be able to tell you if you have a case; for one thing, since they’re working for a portion of your proceeds, they won’t TAKE the case unless they feel they can succeed. You know?

      I had to take a Short-Term Disability from my job in July of last year; that lasted for 3 months, and then I applied for, and was approved for, a Long-Term Disability, also through my employer. They had a private policy for all employees that pays 60% of your earnings for the year before you left on disability; it can be paid for up to three years. The fourth year it drops to 20%.

      I’ve already been told by the LTD carrier that I HAVE to file for SSDI. It’s purely economic for them; whatever Social Security will pay reduces the amount THEY have to pay me. They’re required to make sure I earn the 60% figure; if SSDI pays, say, $1500 a month, then that’s $1500 a month LESS that THEY have to pay.

      Talk to an attorney; if you think you’re going to go that route, the best thing you can do RIGHT AWAY is to start gathering your records…ALL OF THEM! I have copies of everything for the past ten years…all the films, lab reports, radiology reports, everything. If you wait and let the attorneys gather it, it will make the process much harder, and incredibly slower.

      As always, just my opinion…


    • Anonymous
      February 19, 2011 at 10:18 pm

      I have CIDP and was approved for SS disability in 2004 or 2005 i forget which now. If you go to the Social Security website and look up the definitions of disability it is pretty self explanatory. They apply it that way. Like Elmo said it is important to keep records of appointments, doctor visits, test results, and all the other stuff like that.

      Sometimes CIDP is hard to prove as a disabling condition because of a clause that says you must be disabled for “12 continuous months”. Many people with CIDP suffer through a relapse/remitting cycle in which recovery happens in the midst of the relapses which breaks the “12 continuous months” and disallows CIDP to be used as the disabling condition. Then the applicant is forced to use other issues, and without help, they usually fail.

      But, if CIDP, or any other condition has truly disabled you, according to the law, you are entitled to the benefits. You have paid into the system for all of your working life and this is part of what you have paid for. It is not a freebie or a handout, is it only collecting that which you have paid “a premium” for. So, check it out.

      If I can help, ask.

    • Anonymous
      February 20, 2011 at 12:10 am

      I,ve been on disability since 1997. Originally I was on temporary disability for severe depression (I had no real heath probelms back then). Everytime it was time for a review, they kept me on disability. Then in 2003 I was diagnosed with my immune deficiency (common variable immune deficiency), and the next diability review after that…they put me on permanent disability. Then in 2008 I was diagnosed with CIDP, and I was told that with the immune dificiency and the CIDP, they are both automatic qualifications for disability. So ever since, I haven’t gotten any more reviews…I don’t know if they still review you if you are on permanent disability.

      I looked it up online one time about the automatic qualifications for disability, and both of my illnesses were on there. I’ll try to find it, and give you the info if you would like. ๐Ÿ™‚

    • Anonymous
      February 20, 2011 at 1:45 pm

      My heart goes out to you with your pain. I was dx Oct 2008 with GBS. I couldn’t work at all. Find a good SSDI attorney. They do work for a set presentage of your back pay. Gather all your drs names and addresses, even if seen once. The others have wonderful advice. I filed in Jan 2009 and finaly was approved by a Judge on Dec 2010. They have a new rule of being 50 yrs old. Which may limit how much you get. They like to go by when your turned 50 and pay from there. Just depends on the jude and your honest answers. This is the time to be honest and face what you can and cannot do when filling out the forms and talking with the lawyer. Good luck. Remember there are about 50 conpassionate dx that are approved right away. Like others have said.. go to the webcite to learn more.

    • Anonymous
      February 23, 2011 at 7:29 pm

      Hi Amy, you mentioned in your blog that you might be able to find out about the “automatic” qualifications disability. Could you locate that for me & send me the information or email me the link. You can send it to [email][/email] IF you don’t mind. I’ve been diag w/ CIDP since 2002 & most recently diag’d w/ CLL in 2008. I’ve fault going on disability since this whole mess began, but now find myself in a position of needing to do something. I see my neuro tomorrow & plan to discuss it w/ him. But in the meantime, ANY information @ all would be greatly appreciated & helpful. It’s a shame , but I know several people that are on perm disability & it’s quite noticeable that they DO NOT need it, and I’ve always been afraid of being labeled that way, but due to my worsening condition, I no longer care what other people think. Amen ???

      Thanks so much
      Janice B

    • Anonymous
      February 23, 2011 at 7:36 pm

      [I][COLOR=black]Thanks Jules 1960…. not sure if me being 54 helps me or hurts me, but I turned 54 in Nov of 2010. However my diag was in 2002 for the GBS & CIDP, then in 2008 diag w/ Chronic lym Leukemia. Have undergone chemo, radiation, total hip replacement in left hip, due to tumor in femor weakening the bone to the point of fracturing from falling so much due to the Perip Neuro & extremely weak legs…. I’ve tried NOT to be on disab, but now find myself needing to get it. This is sad to say, but I know someone who actually filed for disab, for ” carpel tunnel ” in one wrist, & finally got it, after yrs of fighting, but can somehow be on FACEBOOK all day every day……… makes NO sense to me what so ever. !!! [/COLOR][/I]

    • Anonymous
      February 27, 2011 at 10:01 pm

      Im 42, and got disability when I was 34. Age doesnt matter. It is about how disabled you are, and if your doctor helps you or not. I got mine within 3 months of filing, but have heard the horror stories of those who are still fighting.

      Does your Dr. say youll be disabled for the next year at least? If so you should easily get your benefits, because SSD wont usually go against your Dr.

      My cidp is chronic progressive and is clearly visible via muscle atrophy in my hands and feet, forearms and calfs.

      My work history showed a steady increase in sick leave over the last few years I worked. When I asked my doc for help with SSD his nurse said “wow you lasted longer working than I thought.. it is about time”.

      I still wish I could work ๐Ÿ™

    • Anonymous
      March 7, 2011 at 12:22 pm

      Sorry, John; don’t want to see argumentative, but it is clearly stated that requirements for those OVER 50, who are trying to get a disability, are more relaxed than for those under 50. I get what you’re saying…if your disability is great enough, age doesn’t matter. But, for some, who have “borderline” illnesses (and that’s by SS’s determination, not MINE), being over 50 can make things easier. I’ve been told that they start taking into account your ability to retrain, rehire, etc., after that age, as well as recovery times from illnesses, surgeries, etc.


    • Anonymous
      March 7, 2011 at 1:28 pm

      [I][SIZE=”1″][SIZE=”2″]Elmo, & others

      thanks so much for your help. I’ve just re-read all the blogs about applying for SSI & I am now “Once again” under a NEW Dr’s care. I saw another specialist last week, a Neuromuscular ” doctor, WHO after doing the nerve / muscle conduction tests, just blatently blurted out ” you DO NOT have CIDP”, and you can imagine the SHOCK on my face. That after 9 yrs of being sick & dx in 2003 with GBS then progressed into CIDP, taking IVIG for over 5 yrs, numerous , numerous other issues. I now feel very very depressed that I’m back @ square ONE. I definitely have lower extremities weekness, & peripheal neuropathy, but because my arms/ hands did not indicate a weekness/ numbness & my reflexes returned back to normal. She said that there was NO way I had/ nor ever had CIDP. I’ve had a plasmacytoma in 2002/2003, along @ the same time as the GBS diagnosis, and she’s trying to tell me that she believes it is due to a spine issue. My question is this, is she trying to say that @ the same time, I had THREE diff things wrong / me. GBS- clearly diagnosed with spinal tap. Plasmacytoma in the left femur bone/ had radiation done to it. & then ADD in spine issue that has caused muscle weakness/ numbness ONLY in the “below the knees” numbness. My husband & I both agree that IF this was due to my lower back/ lumbar area, wouldn’t I have dumbness / weakness from the tailbone area / hip area DOWNWARD. And NOT only in the below the knees area. I’m so darned confused now that I could SCREAM………… I’ve just read a whole lot of blogs from other people that have been misdiagnosed for the past 10 yrs of more. What is going on here ? Can they NOT make a definite diag of this illness. ALL my other dr’s & there have been many. Have NEVER said anything to the affect that I did not / nor ever had CIDP. Now she’s wanting to run me thru a whole bunch more tests, expensive tests.
      Any suggestions out there ?


    • Anonymous
      March 8, 2011 at 8:25 am


      I sent you a PM about your SS disability, but I didn’t read this post first. I would be skeptical about a neuro who says all the other ones were wrong and wants to run tests all over again. Perhaps this is a ploy by the Doc to increase their pocketbook?

      If you don’t feel comfortable with this Doc, don’t go back. I just started with a new neuro, explained my situation (I have a bad back too) and he accepted the CIDP. without any new tests.

      If you have recent and reliable tests that prove your diagnosis, and you like this neuro, take copies of the tests to him/her and explain what they mean. Sometimes neuro’s aren’t experienced in CIDP or GBS and don’t know what to look for, and sometimes they are “always right” and you need a new one.

      Good luck, and above all DO NOT DESPAIR, there is always hope

    • Anonymous
      March 10, 2011 at 9:06 pm

      [QUOTE=Elmo]Sorry, John; don’t want to see argumentative, but it is clearly stated that requirements for those OVER 50, who are trying to get a disability, are more relaxed than for those under 50. I get what you’re saying…if your disability is great enough, age doesn’t matter. But, for some, who have “borderline” illnesses (and that’s by SS’s determination, not MINE), being over 50 can make things easier. I’ve been told that they start taking into account your ability to retrain, rehire, etc., after that age, as well as recovery times from illnesses, surgeries, etc.


      I dont see where youre being argumentative. I would say you are correct about the age thing.

      See I have all those symptoms as well, fibro, cfs, etc. but my neuro blames it solely on the cidp. Maybe you should find one that will do the same. The honest to god truth is most doctors, even Neurologists do not know enough about the disease. I still hear the occasional cidp isnt painful, or there is no cns involvement. We know different. I tried to stress the fact your doctor can make it so much easier on you if you have the right one.

      Also its pretty hard to work at any level when you cant write with your hands due to numbness and weakness.

    • Anonymous
      March 11, 2011 at 2:23 pm

      John…thanks for your understanding.

      [B]”Maybe you should find one that will do the same”[/B]…believe me, I think many of us would LOVE to find a doctor that would agree to that. Personally, I’ve been to 6-7 neuro’s in the past two years, and none of them are willing to even consider CIDP, even though I have several of the symptoms. By several, I mean if you presented me with a list of CIDP symptoms, I would have 75% of them, at least, including EMG results that show reduced velocities, myelin degeneration, and prolonged f-waves.

      The biggest issue I have run into when dealing with neuro’s is this: They are less agreeable than economists! ๐Ÿ˜€ The old joke is that you will NEVER get two economists to agree on ANYTHING. But, my experiences have been this:

      1) EVERY neurologist I have seen believes that THEY, and only THEY, are solely qualified to administer EMG tests, and that every other doctor, neurologist or not, is an idiot when it comes to EMG’s. I haven’t had ONE that was willing to accept another’s test results. Not one. Thusly, my EMG results usually get tossed out the window as soon as I sit down.

      2) The other problem I run into is the “but you don’t LOOK sick…” mentality. Because I don’t come in using a wheelchair or walker, and can carry on a decent conversation, I guess, I appear “too healthy”. What they fail to consider, in my opinion, is that it takes a lot of effort to appear that way, and also a LOT of meds. I have to take 60 mgs of Percocet and 20 mgs of Opana every day just to function; that only decreases the pain by about 50%.

      3) I have multiple illnesses occurring at once, and they all want to lump them into one basket, which is absurd, but they all do it. I’ve even had doctors tell me that they were trained to do that, and to NOT do it requires a constant awareness of their actions. So, while I may have many of the CIDP symptoms, when they hear others that aren’t CIDP related, rather than consider that TWO DIFFERENT illnesses are causing the symptoms, they throw their hands up in the air, exasperated, exclaiming that “you have something, we just don’t know what it is. We’ll have to wait and see if it gets worse, and points itself in a clearer direction.” Again, ABSURD! Kind of like telling a cancer patient…”I’m sorry, Elmo, but your tumor just isn’t large enough yet…we have to wait until it gets to the size of a BASKETBALL before we can operate!” :rolleyes: ๐Ÿ˜ก

      As I’ve already made a “short story long”, I’ll just say again…I think a LOT of people here are going through the process to try and find a doctor to diagnose them with CIDP, but, whether it’s out of ignorance or ego, not many are willing to make that diagnosis.


    • Anonymous
      March 11, 2011 at 8:12 pm

      I had a neurosurgeon and orthopedic surgeon say I needed TWO back surgeries. I asked why my hands did not work and both said We don’t know. Couldn’t put her legs are dragging and her arms aren’t working together.They weren’t even go there….let’s operate. Yes, TWO surgeries. I do have Spinal Stenosis but it wasn’t causing the problem. It looked bad on the MRI’s but what I had was from head to toe–CIDP–not just my back.

      I would take the new neuro’s opinion with a grain of salt. To dismiss 3 medical diagnoses is a lot. When I went for 2 ND and 3 rd opinions I was told I might have MS. When I reiterated the original diagnosis they were swayed by it. I had first been seen by a very reputable neurologist who’s expertise was well known. At least they were all in the same area agreeing I had something neuromuscular. I did have all the necessary testing that showed I had CIDP.

      Most neurologists do not know enough about rare diseases and like most physicians aren’t the best referring you to someone else for a possible diagnosis. Good luck.

    • Anonymous
      March 12, 2011 at 2:36 am

      Have to agree w/ Elmo. Age does matter. The 50 yr old + is definetly a factor. I Have been dealing w/ CIDP since my first onset in 1989. Another major relapse from 2001-2005. Started battling w/ SS in 2004. It took 3 years to prevail in 2007 when I turned 50. Got that info directly from a high level SS administrator I was working w/ towards the end. I did this w/o a lawyer but I wouldn’t recommend it. I was VERY tenacious. CIDP is not an “automatic qualifier”, in fact if anything because it’s so rare it take more documention, etc. it really depends on the level of permenant disability CIDP has left you with and your doctors and the medical communtiy going to bat for you. I actually had a SSD advocate towards the end that was paid for by SSA which is a little known fact. She cut through the red tape and that was clincher.

      I have been dealing w/ CIDP for 22 years now. I am currently in another relapse. I have been a GBS/CIDP foundation member since the beginning. But this is the first time I have posted on this forum. I would love to be of help to anyone dealing w/ CIDP so please feel free to contact me.