I have been on disability for thirteen years. I live ALONE so just my one income (I do have a small pension). As I said, stigma is word that does not exist in my vocabulary. Like you I have always been very thrifty/frugal. I'm also a semi-minimalist - I don't like/need a lot of THINGS. I buy most of my clothes at thrift or consignment shops or on clearance. Did that while I was working.

I was PETRIFIED to go on disability. Like you, I didn't know how I'd manage and lic you my biggest fear was health insurance. But you are in HR and likely know that 2 years after you are on SSDI you get on Medicare.

My prayer for you is that you find a good rehumatgologisg who will work together with your pain management doc and find something that will put you in remission It IS p;possible! I've bene in remission for 6+ years (minus 3-4 months that I had to go off meds because of an infection).

It's all crashing in on you right now and seems insurmountable...take deep breaths and take it one day at a time.

Call the rheumatologists office and ask if they have a waiting list for cancellations sooner than October. Tell them you are in PAIN! If you have to, call back every week or so to check for a cancellation.

Sending gentle hugs and prayers!!

Wow, so many responses. I apologize in advance, this is going to be LONG.

WarriorGal,

Ask and ye shall receive, test results ...
May 2015:
ANA Screen Negative Negative
Vitamin B12 208 pg/mL 211 - 911 pg/mL (I'm on supplements now)
25-Hydroxy D2 <5.0 ng/mL ng/mL
25-Hydroxy D3 8.9 ng/mL ng/mL
25-Hydroxy D Total 8.9 ng/mL 25.0 - 80.0 ng/mL (I'm on supplements now)
Tissue Transglutaminase Ab, IgA, S 0.3 U/mL U/mL
--------------------------------------------------------------

LDV* HRV** Neg. Weak Pos. Units
Pos.
--------------------------------------------------------------
Tissue
Trans IgA 0.1 128 <7 7-10 >10 U/mL
--------------------------------------------------------------
*Lowest Detectable Value - Values below this level report
as "<" (less than).
**Highest Reportable Value - Values above this level report
as ">" (greater than).
--------------------------------------------------------------
HLA-B27 Antigen Negative Negative
Cyclic Citrullinated Peptide Ab, S <0.5 U/mL 0.0 - 5.0 U/mL
Interpretation
--------------------------------------------------------------
<5.0 U/mL Negative
--------------------------------------------------------------
>=5.0 U/mL Positive
Rheumatoid Factor <5 0 - 14

Radiology since May 2015
X-rays of right and left hands and lumbar spine all clear of bone and joint abnormalities.

MRI's of right and left shoulders, without contrast, both show extensive tendinopathy, torn subscapularis tendons (I found a study that suggests that though this particular injury is rare in the general population, it is very common in the RA population) and hooked acromion bones. Had arthroscopic surgery on the right last December, I either did not heal properly, or I have a new tear, went in for an MRI with contrast yesterday (in addition to ruling out a tear, they are to look for synovitis in the joint and tendons). The MRI of the left shoulder showed "significant deterioration of the AC joint," spurring, and some fluid in the bursa. X-rays of both shoulders done days before the MRI's, were normal. Pain management specialist thinks I have tendinopathy in my spine but that’s based on exam, not imaging. I have mild tendonitis in my feet, diagnosed by my podiatrist.

September 2015:
CBC w/differential (all well within normal limits)
ALT 53 (after 5 doses of .4ml MTX, 6 doses later I had about 40% hair loss, flaking nails, and mouth sores, rheum stopped MTX)
AST normal
CREATININE 0.90 mg/dL Normal 0.50 - 1.10 mg/dL
Estimated GFR >60 Normal >=60 mL/min/1.73 m2
BUN normal
B12 above normal (with supplementation)

November 2015
MTHFR mutation = C677T (c.665C>T, p.A222V) mutation present in one allele of the MTHFR gene. Patient is a carrier (heterozygous) of the cytosine to thymine nucleotide substitution at position 665 of the MTHFR gene. This mutation results in an amino acid substitution of valine for alanine at position 222 of the MTHFR enzyme (this means that my ability to produce the enzyme that metabolizes folic acid is inhibited, hence my problem with MTX).

December 2015:
A1C 5.5
CMP = all normal except ALT which was 77 (coming down after stopping MTX two months prior) and fasting glucose which was 100
CBC all normal

June 2016:
CMP, all normal except glucose 115 (ALT was 1 point within normal limits, woo hoo!)
A1C 5.1
CREATINE KINASE, TOTAL
Normal Range: 20 - 175 U/L
Your Level: 38 U/L
URIC ACID
Normal Range: 3.0 - 7.0 mg/dL
Your Level: 3.4 mg/dL
CRP
Normal Range: 0.0 - 9.9 mg/L
Your Level: 5.6 mg/L
Sed Rate
Normal Range: 0 - 20 mm/hr
Your Level: 14 mm/hr


The two year waiting period for Medicare is one of the things that scares the hell out of me. It’s bad enough that the SO with his life threatening, expensive, pre-existing condition, will no longer have my insurance. This is where the ACA matters. If it stays in place, we have a chance. If not, I have absolutely no idea what we’ll do.

I ended up talking to a co-worker that I believe is trustworthy. They confirmed that the boss and the boss’s boss would like me gone because I'm seen as an expensive liability and it seems that the plan is to make me so miserable that I quit. While that's a bit disturbing it's nice to know for sure what I'm dealing with, where the criticism is coming from and that I'm not crazy.

This person explained the details of our long term disability to me and it's much more generous than I thought, basically, after the cost of my health care policy on the exchange and income taxes, the net pay ends up being a smidge more than an SSDI payment, the policy will pay until I reach retirement age and it's easier to get than SSDI. The insurance will require me to apply for SSDI but they will pay for my attorney and will continue to pay disability for as long as it takes. So that's pretty great. We're still not ready to see my income cut, but the situation is more tenable than I thought. The real concern, as always, is health insurance, we'll just have to wait and see on that.

Altoclef,

I tried the rheum that the pain management specialist recommended. That rheum wouldn’t see me, his office kept telling me it was because I already had a rheumatologist, even though I explained to them, repeatedly, that I did not. I think he just doesn’t want new patients.

I live in rural Michigan. I have some options, nothing too exciting or particularly close, but feasible. If the one I’m seeing in October doesn’t work out, there’s another one the pain management guy likes, that I might try. If I still come up empty, I’m not sure, but I’m not going to worry about that right now.

I do still have psoriasis though it has been fairly mild for years. I haven’t even asked a doctor for a prescription in 20+ years. I manage with OTC products. I get frequent breakouts on my scalp, eyelids, and around my mouth. Persistent patches behind both ears. Rarely, I get plaques on my torso, arms, and legs. I also have hydradenitis suppurativa that has become severe enough it really ought to be treated with biologics. I am established with a dermatologist but I haven’t seen her in a few years. I’m way overdue, I’ve been so focused on managing the arthritis and blood sugar issues that I’ve neglected my skin issues.

I have such a long list of symptoms and diagnoses that are autoimmune that it’s borderline malpractice that some of my doctors haven’t even seen the red flags. That said, I am a rather stoic person, when I mentioned symptoms and got shot down, I didn’t push. I didn’t start pushing for care until a year and a half ago. I’ll give my PCP’s a free pass. But the three rheumatologists I’ve seen so far, have no excuse. They had a complete medical history and chose to dismiss every single symptom and diagnosis.

I think PsA is a no-brainer, so does my pain management specialist. The psoriasis, the severe pain in my lumbar spine, the achilles tendonitis, the mild, slow to progress presentation, the flaming red patches over my finger joints, the ridged finger and toe nails ...

The extensive tendinopathy, the bi-lateral presentation, the joints that are affected, the way that my fingers swell, the way the stiffness presents, a possible nodule on my arm, and my family history, all point towards RA.

The butterfly rash and other mystery rashes, extreme light sensitivity, and increasing sun sensitivity point towards Lupus, Mixed Connective Tissue, or something else.

And I have a pile of other general autoimmune symptoms, low grade fevers, swollen glands in my throat, crushing fatigue, feeling like hot lead has been poured into my body, cognitive dysfunction, dry sensitive eyes, migraine headaches, weakness, high blood glucose, allergies (and I’m developing new ones like they’re going out of style), hair thinning (even though my liver is back to normal), ALL of my joints have started cracking in the last year (lately, more of my tendons are making noise too), and I have occasional tremors and spasms (on one particularly bad night I broke two dishes and stabbed the fleshy base of my thumb while making dinner).

The crazy rheumatologist has been moving towards naturopathy, she had said a number of off-the-wall and contradictory things during my time with her, and she was very moody and inconsistent. Completely sane and an awesome doctor at one visit, completely off-her-rocker at the next. The really amusing part is that she knew that OTC NSAID’s were part of my treatment, along with the Prednisone and DMARD’s she was prescribing and she was totally fine with it. It wasn’t until someone else prescribed an NSAID that actually worked, that she got bent out of shape. I’m not sure if she thought I was a drug seeker, it seemed more like her ego was bruised, he did more for me in one appointment than she had done in seven. Maybe a combination of the two. It was a surreal appointment. I don’t think she blacklisted me, but I do think some of the other rheums I’ve tried have assumed that I’m shopping around (in a bad way) or that I’m trouble. I guess they feel that no decent, sane patient would ever need to find a new doctor …

Aprilraven, were your symptoms in childhood mild enough that they went unnoticed? I have only recently come to the realization that what I experienced in childhood was not normal. I don’t think I ever complained about it. I was a tough kid, a complete tomboy, and I didn’t know any better. It seems like every few years the symptoms kind of leap forward in severity. The last few years it’s been a steady downhill slide.

I had a candid conversation with the SO about my future and our finances. He was relieved to find out that I might qualify for SSDI and Medicare. I guess I’d never mentioned it, probably because I’ve been afraid to talk about it. It doesn’t solve our problems, we’re still far better off if I’m working, but we’re on the same page when it comes to our financial game plan and understanding what my future may hold, and that feels good.

On Monday I was struck by what a difference a few days off work makes for my health. I almost walked normally. I carried my purse and opened a big glass door without agonizing pain. I was stiff and sore, but it was mild. However that only lasts about a half a day, then I start going downhill. Tuesday morning I'm moderately stiff, painful, and fatigued.By Wednesday I’ll be cranky, very stiff, very painful, and very fatigued. I always get progressively worse as the week goes on. By mid-late week I am frequently 1-5 hours late to work. I soak in a hot bath or rest and wait for Prednisone to kick in. I frequently miss a whole days when I flare badly enough that I know I won’t be better by lunch time. I spend the weekend resting, so that I can start it all over again on Monday. It sucks, but I’m not on DMARD’s or a biologic. There’s a possibility that eventually, I might be better … I dread this fall, winter, and spring though, if it’s anything like last year. The boss is really going to turn on me if I miss as much work as I did last year.

Thank you so much for all the support, it means the world to me.

It's like you have a chip in my brain--was in your situation, glad you posted cause we need to have support.
I was on intermittent Fmla & gave up almost all of my personal , social life to keep going, anything that interfered with work had to go. Even with that I didn't go more than 2 weeks without needing to take a day or two off. Boss said they understand but there was a lot of pressure to perform and know they were looking to find a crack in my work. As a bonus a "superstar" I worked with and who underperformed thought he could use my absence to tell mgmt he was covering part of my workload. Since it wasn't my first rodeo I had been keeping documentation to back up I was completing everything on time. My last review was also hypocritical because they listened to him, then had to retract once I presented my back up.
We all know it's the disease making us sick but the stress dealing with that type of attack made a flare worse I'm sure. I ended up having to go on long term disability and a part of that is agreeing to apply for ssdi. I too felt stigma but have had to shake it off. My family thinks not bouncing back from an illness is a character flaw & that stuck in the back of my mind. We're estranged now, better for me.
I miss regular pay! I've been single quite a few years & live frugally so I've been able to get by but admittedly miss the extras. Everyone's finances are personal , just hope you're able to work it out so you can go out long term if you need to & take care of yourself.

It was interesting to read about PsA and related to childhood and being undiagnosed by the OP and someone else. I have had skin issues since I was a child. They could have been allergy related, but the sores on my head at age 8 had to be something more.

When I got RA, I was sero-negative and not properly diagnosed, despite major joint flares in about 100 joints, according to the second or third rheumatologist I visited who dismissed it as "not RA."

But getting back to PsA, my worst deformity was my right foot - 10 times more severe than the left (although the last year it has worked hard to catch up.) I had a friend with PsA, and one foot was so much worse, although she certainly had the psoriatic sores to go with it.

So my totally unsubstantiated theory, having had an RA diagnosis for 17 years now, is that there is actually a continuum when it comes to these auto-immune diseases. I think my RA is on the PsA side of the continuum. Some are right in the middle, and others veer off in other directions.

If that could ever be verified, instead of these rigid diagnostic standards, perhaps it could be acknowledged that someone has RA with PsA symptoms presenting. Or RA with lupus symptoms presenting. Etc.

That also might help with prescribing meds. Certainly, I am a weird duck with meds, I am desperate to go back on Kineret, because it worked so much better than anything else I have been on. I only went off because the DMARDs failed. And Kineret didn't work at all without a DMARD.

I guess this doesn't help you much, except to say that it sounds like maybe you have RA, presenting with a LOT of PsA symptoms. Or PsA with a lot of RA symptoms? That might help you think about your illness, as being more fluid than present classifications allow.

Anyway, I am glad you have the financial issues more or less worked out. And I would never resign from your job, because of the way they are treating you. Let them suffer! Don't leave unless YOU have to. Such intimidation needs to be reported somewhere.

I hope you get a diagnosis in October and meds to go with it. Even if the NSAIDs worked a bit, they are simply not the answer to controlling most autoimmune diseases, and even if they work, they will end up causing the RA (or PsA) to get worse. You do need to hit these diseases hard in the beginning to keep them from being severe. It is time to hit this disease.

Marlene, that is actually very helpful. It helps me come to terms with the overlapping and seemingly contradictory symptoms that have been driving me crazy because I don't fit into a nice neat little box.

We know that other diseases exist on a spectrum, or whatever you want to call it, why not RA and PsA which are so similar that they're often indistinguishable? It would help a lot of seronegative patients make some sense of their overlapping, contradictory symptoms and it would help us get diagnosis and treatment. I have a friend who is in a remarkably similar position whose diagnosis changes every time she changes rheumatologists. It makes it hard to be taken or treated seriously.

Etain, what you just said is important. A lot of our new members, and some old ones too, get frustrated by not getting an immediate diagnosis. To me, better unclear than wrong. My first rheumy used "unspecified inflammatory polyarthropathy" for me. My insurance company didn't squawk about biologics with that diagnosis.

Keeping it vague has given me the opportunity to try one drug that's only approved for RA, and another that is only for PsA and AS. A more definite diagnosis would narrow the options. Right now, my doctor vacillates between PsA with axial involvement and AS with peripheral involvement, and doesn't have anything engraved in stone. (This is about the same as the difference between bluish-green and greenish blue: they meet in the middle eventually.)

If a person has a high RF, a high anti-CCP, nodules, etc., hanging the RA tag on them is very reasonable. For so many of us where it isn't quite that clear cut, a set-in-stone diagnosis opens the door for the next doctor to contest it, and to contest the very fact that we have SOME kind of joint problem. We can hope for better blood tests down the road. In the meantime, it's all about finding the right rheumatologist.

Hi guys,

I've been absent for two months while waiting to see the new rheumatologist, and dermatologist. I needed to step away and not think about it since there was nothing more I could do in the interim.

But now I'm thrilled to say that I can give you an update and while it's not good news for my physical health, it is great news for my mental health.

I have seen a new dermatologist and rheumatologist.

As I suspected, my dx was changed to PsA. He called it a "no-brainer" and expressed disappointment that I'd gone ~25-30 years without a proper diagnosis and treatment. He said he's pretty much become the repository for seronegative patients in our area because the other rheums are so reluctant to diagnose and treat. He confirmed that my ridged, yellowed, and lifting nails are psoriatic. He identified a mild psoriasis plaque on my elbow, and easily identified redness and swelling that other rheums haven't noticed. He also did a thorough head to toe exam. It was apparent that he had closely read my entire medical record and the lengthy history of symptoms I had sent him. He was thoughtful, explained everything, and made sure I had the opportunity to ask questions. He did not dismiss any of my concerns. I was so happy and relieved I could've cried. THIS is how healthcare should be.

The new rheum was also the FIRST to run a high sensitivity CRP on me. It was quite high. For the first time I have lab work that shows something!

Depotblue asked me a year ago why my last rheum took me off MTX without trying Leucovorin first. I had been on a 4 mg OTC folic acid supplement. My ALT was elevated, I'd lost about 40% of my hair, my nails were flaking apart, and I had mouth sores. She stopped MTX and ordered genetic MTHFR testing instead. When that came back positive, she indicated on my record that I should never take MTX again because I can't metabolize folic acid. Well, the new rheum thought that was nuts. He echoed Depotblue's question, why didn't she try Leucovorin? He also said that ALT isn't used to monitor MTX anymore, AST is and my AST has never been abnormal. So, a year later, I've come full circle, I re-start MTX tonight. We're starting at smaller dose and he's going to do more frequent testing at first, to proceed carefully, but he wants to give MTX a proper chance and I support that. Heck, I'm excited to go on a DMARD again. I polished off my last bottle of wine last night, I'm good to go :)

Rheum does not think the rash is a true mylar rash but he wasn't able to see it in all its glory. Dermatologist said she couldn't tell. She's going to retest me for Lupus. If the tests are negative, she'll treat for rosacea and see if that works. She is also treating my hydradenitis suppurativa and for the first time in 18 years, after multiple failed surgeries and medications, I have a treatment that's working!

Also saw the ortho for a follow up on my right shoulder. I'm ten months post repair of the subscapularis tendon and arthroplasty and still in just as much pain. The tendons are inflamed. MRI is inconclusive about a tear. I'm only managing because I take so much Indocin and Baclofen. She's not recommending any action at this time. Basically, try to get the disease under control, get steroid injections, don't let the joint freeze up, and see how it goes. She wants to hold off on repairing the left shoulder until we have some idea what the final outcome of the surgery on the right is.

I've been in a moderate flare for a week, and I don't even care, sure the pain and fatigue suck, but I feel like this huge weight has been lifted. I finally have a diagnosis that fits. I have doctors who have a plan for treating me.

The boss has been much nicer this past month. I hope it keeps up, though it makes me nervous too. Kind of waiting for the other shoe to drop ... Still, I'm not letting it get me down.

I want to thank you all for your advice and support. You are wonderful.