Rheumy/Dx Change & SSDI Claim?

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Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 9/28/2007 11:47 AM (GMT -7)   
I need to change rheumy's due to mine becoming ill himself.

I know lots of you have had your diagnosis changed when you have to move to a new doctor. Anyone have the lupus dx removed while waiting for a Administrative Law Judge (ALJ) SS review?

I'm concerned about locating an appropriate Dr who will continuing supporting my SSDI claim -- I had lots of support with my previous doctor.

Has anyone experienced anything similar to this?

Thanks,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
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   Posted 9/28/2007 4:40 PM (GMT -7)   
Urghhhhhhhh!!! OH NO!!! I never thought of that when you lost your doc . . . SIO sorry Lynn . . . I hope someone here knows more about this. I would hope your doctor's records will weigh heavily in your case . . . but I wonder who presents that information. Urghhhhhh!!! What a quandary!!!

Have you chosen another doc yet?

Is your hearing scheduled?

Lynnwood . . . make sure you contact your local Lupus Foundation chapter and see if they have a referral list for rheumies. Also, TRY to get yourself to a support group meeting and ask each member in attendance who they use and how they like their rheumy . . . it might give you a really good idea who to try.

Keep us posted . . . . urghhhhhh!!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Gidget^
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Date Joined Aug 2007
Total Posts : 171
   Posted 9/28/2007 4:41 PM (GMT -7)   
That's not a good spot to be in. I wonder if you were to go to a rheumy that your rheumy recommends and he sends a letter along with you that might help. Unfortunately if he is seriously ill you're not going to be able to get his help. Good rheumy's are so hard to find. Maybe you could call your local lupus chapter and tell them your problem and see if they have any doctor that they can refer you to.

Good luck!
Gidget^


cured4real?
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Date Joined Dec 2005
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   Posted 9/28/2007 5:17 PM (GMT -7)   
Hi Lynnwood,
I didn't have any AI diagnosis at all when I got my SSDI, just a bunch of separate problems. I think that if your lawyer is good and knowledgeable, mine knew more about my medical state than I did and had some medical training/experience, they may be able to help you get what you need from your rheumy when the time comes. My records were all old because I didn't have insurance or money to go anywhere but the ER and they did no diagnosis there, except for my heart. The doctors SS hired were the ones that recommended me, even more so than some of my own. I don't know if they have you scheduled to see any of their doctors, but you might want to make sure that you bring your important labs and stuff to them. What also counted was a note where I was written out of work by a doc I no longer saw. I think what mattered most in my trial was my lawyers were really really good and worked in a big law firm that only did social security and some of the employees there used to work for social security. The firm was run by women and some were disabled. They were really good. All the health problems aside, a vocational expert will be called in to say how many jobs are available with your given limitations (they never say you can't work at all in any capacity, they always say you can in limited capacity) but if there are no jobs where say, you don't have to lift (I'm unable to), don't have this or that limit, then there has to be a certain percentage of jobs in your job market that would employ you given your limits. If not, you get social security. I physically look pretty bad, with pigment problems and all, and between back and liver, and my heart at the time, which I didn't even know about.

To be on the safe side, can you shop around on the new rheumy? If you don't like the new one, try another? You wouldn't want to stay with someone that won't give you the treatment you need anyway. I wish you the best in finding a good rheumatologist and trying to get the old one to write you out of work before you leave him. If he does that, it goes a long way to helping you. Take care and will keep you in my thoughts and prayers.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Barbara Lee
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Date Joined Sep 2003
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   Posted 9/28/2007 7:23 PM (GMT -7)   
Hi Lynn:

I'm not up to date on all this stuff. I'm letting my attorney handle it. Like I said in my post, I'm having to prove I was disable prior to Sept 30, 2004. Any conditions after that time are not allowed. Needless to say, I'm stressing out about SSDI. Do you have a hearing date yet? I'd give your attorney a call and let him make recommendations you may need as far as your doctor closing up his practice.

Sorry I wasn't of much help, but you know you're in my prayers and thoughts many times a day.

Hugs,

Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 9/28/2007 7:35 PM (GMT -7)   
I have all the info from my previous rhuemy, including his statements about my work status. I'm probably just worrying too much, but I happened to think of the folks who are getting dx w/lupus, then un-dx'd....and I bet that would really throw SS for a loop!

I've been waiting for my ALJ (SS judge) hearing for almost two years, but no date set yet. I think my actual attorney is good, but don't know for sure as I've only been dealing w/a paralegal who is NOT impressing me at all.

I have several tips on rheumies -- right now I'm waiting to get input from a in-law who is a doctor and my regular primary care doc.

Feeling much better than the exhaustion I ran into last week, but just spent a few hours out w/my friends and I get tired & in pain (minor) so easily.....ARG.

Thanks everyone,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
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Date Joined Jan 2005
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   Posted 9/28/2007 9:37 PM (GMT -7)   
*phewww* That paper work sounds like the ticket.

Glad you have some feelers out for a new rheumy . . . I see mine for the first time on Nov 15 *shudder, shudder, shiver* . . . but I've been feeling pretty good last little bit, so no rush (right now) for me.

I'm glad you spent some time with your friends and you are feeling better . . . but it sounds like you are still a bit fragile . . .

You've only dealt with the paralegal??? This attorney must be SO busy that he doesn't meet his new clients? Hmmmmm maybe I should seek employment with one of these fellas. I hope your hearing comes and goes w/o problems. We'll all wait with you for news.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
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Date Joined Sep 2005
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   Posted 9/28/2007 10:00 PM (GMT -7)   
I would ask to see the actual attorney or a different paralegal if you are unimpressed. Seriously you need to know if he is committed. My attorney was not hired until I had done all the medical stuff I could to back my claim up then went to him as he was the one who could organize stuff. He got me my hearing more than 6 months before I would have been scheduled. If you never see the actual attorney there is a chance he has no knowledge of your case and the paralegal is the one handling it if that is so you could be in big trouble. I wish you luck. I would see the rheumy then decide if that doctor's stuff should go to SS. If he/she is not inclined to listen to your old rheumy then try another and don't use the records generated by that visit. Good luck.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


hippimom2
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Date Joined Jul 2005
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   Posted 9/29/2007 8:44 AM (GMT -7)   
Lynnwood, I don't have much to add except that I don't blame you for being anxious about changing rheumies and dealing with diagnosis stuff, especially when you are in the middle of the whole disability thing. When I thought we might be moving to a different part of the state, one of the things I was most stressed about was the thought of switching rheumies. It is frustrating that someone can undiagnose you after another doc has already determined a diagnosis.

It sounds like you are on track with finding another good rheumy, although your old rheumy sounds like one of a kind. There are other good rheumies out there though. Good luck with everything and I hope your fatigue is getting better. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 9/29/2007 8:54 AM (GMT -7)   
Actually, I can't tell anymore if I'm fragile or if I'm normal. You guys can vote!

Friday I woke about 10am after 12 hrs of sleep. Had breakfast/meds and read in bed till about 1:30. Got up, showered, did some mucking about w/reading HW, paying bills and such. Can't remember having lunch, I might have had something small. Was feeling fine.

Had a small snack as dinner was to be about 8pm. Left home @ 5 to meet at 5:30 for caravan to "miniature" show. (Something some friends are into that I just wanted to see one show.) The caravan (only 3 of us) driver didn't arrive till about 6. The event was supposed to start at 6:30, we got there about 6:25. We had to wait in a hot, crowded hall as they'd decided, without telling anyone, to move the opening time to 7pm. Everyone was congregating along one wall, I moved to the other side and sat down (floor) in the open where it was cooler. People started congregating there, so I moved to another spot and was leaning against the walk. This really large (not tall) woman came up and stood 1/2 in front of me, definitely in *my* space. Her arm was so close that her hand fell naturally in front of me only about 5 inches from my privates. I was speechless, and stood there beaming evil energy at her for a while. She didn't move, so I went and stood with my friends. Was ok until another woman started letting her purse bang against my butt. ARG.

Finally the show opened and we looked at miniature things for a while. I was ready to go after about 40 minutes; it was a small show and I'd walked around it 3 times by then. One of my friends was still trying to buy something, but was in line behind some crazy woman who kept talking instead of finishing her purchase. It was warm with lots of light in the show room, so I was waiting in the hall outside. It was cold out there, but nice. I found a chair and some sales magazine to flip through.

Finally we left and got to the restaurant about 8:45. Only then did I realize that my back muscles had clenched up from the cold. And when they do that, they go into spasm and it takes a day or two to work out the pain. Sigh. And my eyes were driving me nuts. Light, dryness, looking at tiny things at an age where I can only see between 1.5 & 5 ft away, and only have distance glasses...didn't help that I'd been using reading glasses earlier in the day. And I was too hungry to eat at a Korean Tofu Restaurant -- not my idea of comfort food! Anyway, we ate & by the time I got home I was a tired puppy!

I don't know that any of that was lupus-related, but it was exhausting. Normal or fragile??? I sure don't know!

Have a good day,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 9/29/2007 11:57 AM (GMT -7)   
Well, I say fragile. I would avoid something like the minature show ever again. The fact you were in bed most of the day and ended up in bad shape says it all. Yes part is the AI issues. The lights were a serious problem as I am pretty sure you were exposed to florescent bulbs which give off UV. Please avoid such a long day again we all worry about you.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/29/2007 7:46 PM (GMT -7)   
I vote fragile as well. You described it well.

I have actually been carrying a sack chair in my trunk WITH a folding style foot rest. Whenever I end up somewhere where I can't get my feet up, I go back to my car and carry in my own little foot rest. My own mother was surprised, but I do much better if I keep my feet up when I'm sitting and I've ended up at FAR too many places where there isn't even a chair to sit in.

It sounds like a l-o-n-g miserable event considering all the delays. *sigh* Sorry you have back spasms . . . the pits!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/30/2007 11:48 PM (GMT -7)   
Hey Lynnwood . . . I hope you are ok . . . haven't heard from you for a couple days and I know you've been feeling lousy.

Just thinking of you!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 10/1/2007 7:40 AM (GMT -7)   
Oh gosh, your evening sounded miserable. I think so much of what you went through is related to lupus and what it does to the body and the mind. I find I am so much more sensitive to things both emotionally and physically since I've been sick. I get upset, irritated and angry much much easier and I don't do well in situations like you described. Not only did you have to deal with irritating surroundlings, there were also many things that weren't good for your lupus and sjogrens such as all the standing, the lights, and the changes in temp and waiting to eat. I often get anxious in situations like that where so much is out of my control and you don't know when things will be over and when you'll get to rest or eat.

I hope this hasb't caused things to flare for you. Pamper yourself and stay in bed and read or sleep or whatever you need to do. I'm thinking of you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

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Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 10/1/2007 8:36 AM (GMT -7)   
I"m fine & feeling back to normal....thanks for thinking of me.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

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