Misdiagnosed?

Hi everyone, I was denied for SSA so I got an attorney to help me with the case, I got a call from my specialist saying he received paperwork from my attorney so he need it to see me. I was diagnosed with lupus Sept of last year and now my doctor is saying he is not convince I have lupus that’s why he needed to see me. He stated the last 2 blood work for lupus was negative. I was in shock because I have been taking medication for lupus since September of last year. So he told me to be fair with me and the attorney he was sending me to get more blood work and chest x rays. He told me I do have fibromyalgia but he is not sure about lupus even when I have the symptoms. Is this normal??? What do I do?? I feel completely lost and confused.

Sonia

Disability is not based on your diagnosis but your ability to function. It is hard to get disability for the AI diseases unless you have involvement of the organs- SSA is not real impressed by aches and pains and fatigue no matter how disruptive the symptoms are to you. Unfortunately lupus sometimes takes many years to diagnose - is it possible you don't have lupus- that actually would be good news There are new drugs out for fibromyalgia that are very effective not so much with lupus

Hi Sonia

I feel your confusion, and I'm sorry for all this. I'm curious why your specialist never said anything about your last two blood works? I don't know what your specialist is? Rheumatologist?

This is what I tell my daughter when she's upset: Wait 24 hours, give it some time to think it through and don't do anything out of emotion. Yes, easier said than done, I know. Sonia, you know how you feel, proceed as though you still have lupus. Talk to your attorney, get his/her advice. For me, I would have trouble trusting this specialist now, but that's just me. If he was not convinced, he shouldn't have said it was lupus. Do you have other doctors that are on board with pursuing your disability claim? I'm sure you will get some more discussion here to help you.

Hug, Trisha

Unfortunately I think it is more normal than one might think. It takes forever to even get the initial diagnosis for lupus and some docs just can’t seem to put their egos aside to simply state “I just don’t know” let me help you get a second opinion. In your case you most definitely need a second opinion. When I first became symptomatic even though my labs all pointed to lupus I actually had a rheumatologist tell me I did NOT have it and that I should go see a dermatologist of all things because of the nodules in my hands!!! Thankfully my gp at the time did not agree and faxed all of my records to the Johns Hopkins rheumatology clinic where a team of 8-10 docs sit and go over all your records before you can even make an appt. I new I was in trouble when the clinic called and set up an appt ASAP. I don’t know where you live but try googling lupus clinics or centers and see if their are a group of specialists near you and fax all your records and let someone else weigh in as to whether or not you have lupus. My opinion…if your initial labs say you do than you probably do. Just sounds like maybe the meds have your lupus under control from a clinical stand point just not a symptomatic one. We all understand your frustration and wish you the best!!! Good luck!!! Let us know how it all works out.
Btw what type of lawyer did you get to help you with your SSA benefits???

Hey Sonia

That stinks! You probably do have it, but it often takes a very long time for Dr.'s even good ones to be sure of diagnosis--typically 4 yrs. and 3 doctors. They don't want to be wrong. It is very hard. I am in a similar situation. I have been seeing a rheumatologist for 2 yrs. very good guy, hospital associated, etc. But I have "autoimmune findings, unspecified" which carries an ICD-9 code but doesn't necessarily qualify me for disability. However, your Dr. should know your limitations and that should be how disability judges. I had FMLA papers drafted by my DR. for my last job due to my disorder just because the absence policy was too strict and with an autoimmune disorder we tend to pick up every bug that comes thru and it hits us hard. And that may have been part of why I had to quit that job. They wanted me gone. And I'm sure it was financially motivated--I'm just not sure what all the reasons were. Then, I had new positions judging me by my medical diagnosis and med list in trying to find another job. So, much for no discrimination. So, it may take awhile to get there. When a screening agency put restrictions on me for my med list, a friend of mine said maybe it's time for disability, and I said Heck no! I can still work. I'm not in perfect health by any means but I can still do my job and make compensations. When the day comes that I can't, I hope I will have a diagnosis and proof of my disability. I know my Dr. will be on my team for sure. Everybody has labs that are changeable and none of them are completely set in stone as diagnostic. Symptoms and labs and time seem to be the best indicators. But if you are unable to do your job or any other job your Dr. should help you get disability. I'm sorry the road is so rocky. As a rule, I hate attorneys, but it seems more lately are needed with these cases where just because all of your parts are there doesn't mean they all work. Best of Luck to you. I hope things fall into place. Karla

Julie,

Don't be shy, tell us what you really think of this rheumie? LOL

But seriously, Sonia said her specialist, but she didn't say rheumie, so I wonder what type of doctor she is dealing with.

jujubeee said:

Forgive me for saying this, but I PROVED I have lupus, had a ton of documentation, etc, also proved I have diabetes, pernicious anemia, osteoarthritis, peripheral neuropathy, multiple cranial neuropathies (including trigeminal neuralgia), hypertension, pcos, etc etc etc, walk assisted, and they acknowledged that I was able to prove all my conditions but DENIED me anyway at ssa saying I could still work. My lawyer shook his head. I'm on a two year wait now for an appeal hearing. So don't sweat it.

Was your ANA positive when you were first dx'd? Could it be that your meds are now working and so your ANA numbers are down? If THAT is the case your rheumie is an idiot.

HUGS, Julie

LOL thank you for the clarification on that Julie : )

first of all are you going to Rheumatologist? hope so....because he should know this is very common in SLE patients. We go in and out of remission and we tend to be atypical on all our tests. So yes...you can have SLE and off and on negative ANA tests...that should not have been his only reason though for saying you have SLE.

If you doctor is not behind you ...you are not going to get Disability i hate to tell you. You really need all your doctors on board and this makes me suspicious of the attorney you hired because he/she should have asked you if all your doctors have encouraged you to get disability as one of his first questions.

Chest x rays? why? You should read few books or join some lupus group to read about how they diagnose it etc. So you are informed. I worked for many years with full blown lupus ...yes i had to work part time and i understand it affects each of different.

If you can try to find a person who use to work for disability. Your SSI office can give you list of approved people who can help you get your disability if you feel you really want or need it.

Personally...i wish i could still work and best advice from my first rheum doc was to keep working for as long as possible. it give your purpose, helps take your mind off it...being ill plus your self esteem is much better. I had to quit and waited another ten years before applied because i was lucky that we had planned for the day when i might not be able to work. Was when we divorced and my husband also was sick...money became issue after going through all our savings etc. So i applied but was still very ashamed. Plus limits greatly what doctors you can see..etc. I am glad it is there but i wish it was better than how it is.

Good luck and hopefully you will stay in remission for SLE ...but normally eventually you come out of it but might be 5 years!

One of the reasons we are here - LifewithLupus group is to help with information. We are here to help each other anyway we can for support, advice and hope.

My first Rheumie visit, I was diagnosed as RA. He ordered more bloodwork, and when I returned for my 2nd visit, he said he didn't know what to call me: I had symptoms of RA but my bloodwork screamed LUPUS, so here I am. I do have more symptoms of lupus now that I've learned more about it.

Draginfli has posted a site for Disability, I can get that for you Sonia.

Trisha

SSA is like lupus - unpredictable.

Yes, one of the first thing - age is a big factor for disability, they consider you 'untrainable' after 50. EXCUSE ME!

I agree Julie, its a personal decision when to apply. I used to live to work, now my work hinders my life. You offer some good advice for Sonia : )

Trisha

: )

I like that Rhupus thing, RA + lupus huh?

Sorry, I'm slow sometimes, can't see through the fog ha,ha.

I like you too Julie

jujubeee said:

I like you Miss Sunny Trish with Rhupus!!!! ;)

Bless your heart with the disability issues. I worked for several years, after I was diagnosed with SLE Lupus, but then I went out on disability at work and ran out of benefits and a paycheck. They were harassing me about being sick and I finally received a disability retirement from my job. With this came recertification every six months and my case worker gave me HELL every time...she accused me of not being sick and asked why I couldn't work. After taking enough of her crap, I yelled at her on the phone "do I have to cut my wrists and bleed for you people to take me seriously?".....that got their attention and I received a phone call from a psychologist asking if I was going to harm myself. From then on, they listened to me and my doctor. I received a new case worker and it has been OK since then. As for SSA, I had to file for disability benefits, too, even though I tried to wait. It was the best thing that I could have done since I had no way of working and my former employer insisted that I apply for SS benefits as part of my disability retirement. I still have to recertify with SS, too, but my doctor keeps writing the same letter to them and we haven't had a problem in the past few years.

My advice is to keep speaking up for yourself...no matter what! Find a doctor who will certify that you need disability! Document everything!

One more thing, my former employer sent me for a second opinion with a worker's comp quack doctor...the first question he asked me was "so, how did you get Lupus?"....I said, "I don't know...you're the doctor, you tell me!" What a joke! This guy lied on his report saying I didn't have Lupus and that I drove myself to the appt. when my husband was with me and he did the driving that day. This quack had never seen a Lupus patient since he dealt with broken bones, etc.

Love and hugs,

Lori

OMG!!!!!, Sorry that you are going through this !!! When i first applied for ssa i was also deined , the ss doctors said that it was not happening and they don't see that i was in the kind of PAIN i was having ... Hold on and by the way i appealed and started over with a lawyer but they were not doing anything for me so they waived and i did it all on my own and yes the judge sided with me !!! It took about 2-3 years , but it happened , smile . Make sure that you keep up with the doctor and if you have to change doctors- do it and keep copies of everything they write down ( notes , etc... ) for your own personal records it really helps , And DON"T GIVE UP . It will take time but hay! you know what is going on with yourself better than anyone !!! Stay on top of things , because ssa really don't realize that LUPUS is a life problem yet !!!! Not to many of us are speaking up about it and it's still NEW to doctors and health - so stay strong and keep fighting for help!!!! God bless you and good luck .... Beverly L.

Firstflorde1

I have never had any positive blood work show up for lupus, however, I do have three positive skin biopsies for Tumid lupus. My symptoms fit the lupus criteria and therefore I have been diagonsied with SLE. So I really think that it is up to the ss panel of people that you have making the decision.

Best of Lucky! Deenie

Hello Sonia,

Your attorney should'nt be going by your GP's aspect on the subject...it's the specialist himself/herself as you was refered to regarding the rheumo and that's who you've been treated with and even if your last two lots of bloods have shown negative that as nothing to do with it as this can happen with Lupus...and there's quite a few members with fibro besides Lupus.

Disability should'nt be looked at by your bloods it's how you are mentally and physcially and what meds you've been having to treat the condition.

Although your GP most likely will be asked about your condition he should only really comment on your mental and physical status...the rest is down to the report from the specialist and your attorney sending you for more bloods and x-rays is solving alot more issues and going over their heads also.

Best of luck Terri & all my love in this situation. xxx

Sonia

here is the link for Draginfli's discussion:

http://www.lifewithlupus.org/forum/topics/social-security-disability-tips

I'm glad you brought this up, I need to revisit this myself : )

We are here for you

Trisha

firstflorde1 said:

That will be nice thanks.









sunrisetrisha said:

One of the reasons we are here - LifewithLupus group is to help with information. We are here to help each other anyway we can for support, advice and hope.

My first Rheumie visit, I was diagnosed as RA. He ordered more bloodwork, and when I returned for my 2nd visit, he said he didn't know what to call me: I had symptoms of RA but my bloodwork screamed LUPUS, so here I am. I do have more symptoms of lupus now that I've learned more about it.

Draginfli has posted a site for Disability, I can get that for you Sonia.

Trisha

Julie,

You are great! You say what we need to hear and I love that : )

Sonia, I can tell from your discussion, you don't trust this doctor - and like Julie said - its time to find a new one. I wasn't real sure about my rheumie, but on the 2nd visit when he diagnosed lupus - and didn't want to give me prednisone because he knew I had a gastric bypass and didn't want me to regain any weight - I respected him. At first, I wasn't sure that I liked him. Then he did a physical exam and pointed out all my arthritis, which I didn't even realize and told me its so much worse on my left side.

I don't have a lawyer yet, I haven't filed yet. I would like to continue to work, but I can't continue at my current job. If I can't get help from vocational rehab, then I will file. My counselor has been the one to suggest I get disability, and he's been really good at helping people in the past, so I'll start there.

You have support and understanding here, and don't hesitate to ask for help, we're here for each other : )

Hugs, Trisha



jujubeee said:

I am currently waiting for an appeal hearing for SSDI. Your not alone. It's a hard tough road but if you don't give up you WILL eventually be approved and they will owe you BACKPAY. Your lawyers are working off a percent and should not be charging you anything. (contingency) If they are charging you then fire them immediately and get a disability lawyer that works on contingency. It's unheard of in this day and age for them to charge up front!!!! Most disability lawyers take 25 to 30% of your backpay rewarded when you are approved and the cap or most they can take is $6000 BY LAW.

Your doctor sounds very flakey and like he doesn't know one patient from another. Perhaps he has disorganized notes. Who knows. I would RUN not walk, RUN to a new rheumatologist right away. Hopefully you have the copy of your labs that were positive. You have got to get these from the quack rheumie's office and any office notes they will give you from the past when you were dx'd with lupus. TAKE THESE TO A NEW RHEUMATOGIST IMMEDIATELY. DO NOT PASS GO. (do not collect $200 lol) GO GO GO GO GO

I know it's hard but you have to do it. This doctor is not doing your health any favors and your whole future depends on it. I know. I had a tia and my rheumie was still standing there twiddling his thumbs and only treating my lupus with plaquenil and high doses of prednisone. A new rheumie was the best thing I ever did. He put me on Cellcept and I am finally improving. These guys don't know enough about lupus to treat a worm with lupus sometimes. (if worms had lupus)

Idk why. Rheumatology and immunology are very difficult specialties and you would think they would be more knowledgable. You need a rheumatologist who will listen to you, consider your symptoms, etc.

Much love, Julie

ps. remember it is a matter of WHEN, not IF that you receive your disability.

Get a second opinion. and dont forget to let ssi know about the emotional and mental stress this disease is causing as well. Its the overall picture that they look at. Good Luck

IT was extremely illegal for them to harasse you for having SLE (any illness) and missing work. Legally they must work with you and try to make the job as easy on you as possible. This is where the great Doctors rise above the average ones. My Doctors were ones that informed me it was illegal, wrote letters saying exactly what I could or could not do including that I could not work any more over time and my employer had to follow to the T.

Of course you have to have follow the rules of your work as to getting Dr excuses for when you are sick.

You were originally on your State Disability...which is normal...after a year than you move on and apply for Federal SSI. Since all my doctors were pushing me for years to apply...i know that helped me greatly. Plus, I did not just have SLE but RA, fibro and many other things wrong with me.

I just would like people to know that if all your doctors are behind you...than work as long as you can...be a team with your group of doctors. Usually with lupus since it affects us all in so many different ways we have various doctors we see besides just our Rheum doc..

So do not give up hope.

loriken214 said:

Bless your heart with the disability issues. I worked for several years, after I was diagnosed with SLE Lupus, but then I went out on disability at work and ran out of benefits and a paycheck. They were harassing me about being sick and I finally received a disability retirement from my job. With this came recertification every six months and my case worker gave me HELL every time...she accused me of not being sick and asked why I couldn't work. After taking enough of her crap, I yelled at her on the phone "do I have to cut my wrists and bleed for you people to take me seriously?".....that got their attention and I received a phone call from a psychologist asking if I was going to harm myself. From then on, they listened to me and my doctor. I received a new case worker and it has been OK since then. As for SSA, I had to file for disability benefits, too, even though I tried to wait. It was the best thing that I could have done since I had no way of working and my former employer insisted that I apply for SS benefits as part of my disability retirement. I still have to recertify with SS, too, but my doctor keeps writing the same letter to them and we haven't had a problem in the past few years.

My advice is to keep speaking up for yourself...no matter what! Find a doctor who will certify that you need disability! Document everything!

One more thing, my former employer sent me for a second opinion with a worker's comp quack doctor...the first question he asked me was "so, how did you get Lupus?"....I said, "I don't know...you're the doctor, you tell me!" What a joke! This guy lied on his report saying I didn't have Lupus and that I drove myself to the appt. when my husband was with me and he did the driving that day. This quack had never seen a Lupus patient since he dealt with broken bones, etc.

Love and hugs,

Lori

Sonia,

as you can see you brought up a lot of emotional triggers for all of us! Just try and keep working as long as you can...you might have your doctor sign you off for a week or so to rest and get caught up if you are at the end.

communicate with your doctor and your employer. Get to know your legal rights...your doctor should know what your state laws as well as federal laws. If doc does not go contact your state labor board and email or speak to someone.

If you treat your employer with respect and let them know you sincerely are trying your best if they are decent people they will hear that you are trying your best. Give them a chance to step up and be the right kind of employer as all should be. This is about being a decent person ..both of you..you as employee and them as employer.

I know it is very hard but you just might be surprised. I spoke the CEO in my job and come to find out, his sister had lupus. He knew how hard I was working to just look normal and I am sure he part of reasons I was treated so well. So you just never know who has sister, relative or friend with lupus and will understand more than you think.

I hope you do speak with your rheum...if they seem to not care...here is how i judge them. If i was sick and possibly dying would I think they do all they could to save my life...or would they just come visit me once a day as their duty? We all want a doctor who is going to care so get one!

I just hope you see how many others are in same boat. Auto immune diseases are difficult to diagnose and there are now hundreds of them...so it is hard for even a rheum doc to keep all in their head.

Also why it was called lupus in first place..invasive as wolf! though they sure are beautiful animals! Well...i hope all of you out there get help you all need..as i hope i myself do too.