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Dr Refuses To Diagnose SLE, What Should I Do?

Dr Refuses To Diagnose SLE, What Should I Do?

2 years ago began having neurological symptoms & has continued to progress..As of Jan symptoms so bad most days house bound resting. Debilitating fatigue, joint pain, swollen hands fingers & wrists, heavy weak legs & arms, SOB, difficulty swallowing & all sorts of buzzing, numbness & tingling. Neurologist ruled out MS and ran labs that came back + for SLE. Positive ANA, SM, RNP & Chromatin so referred me to rheumatologist. Got in to see rheumy & says bloodwork is likely false positives… read more

A MyLupusTeam Member said:

@A MyLupusTeam Member I added you to my team so I can hopefully see your updates and stay in touch.

Thank you for all the additional info. It’s interesting how similar our stories are.

My whole family has/had Hashi’s from my grandma, dad, aunt, cousins and sister so I naturally thought I would have it too! But 25 yrs of testing my thyroid I’ve never had an “off” level. Just an enlarged thyroid due to inflammation of unknown origin

I had all 3 thyroid antibodies show up but all at very low levels and not enough to cause damage or symptoms. So like yours, the endo sent me to the rheumatologist. The rheumy is dragging their feet wanting to see more evidence of inflammation markers in bloodwork, symptoms be damned 😡

I was born with an autoimmune platelet problem so my platelets are always low and I have a positive homogeneous ANA. An allergist tested me for everything under the sun and found no allergies that could be causing my problems, in particular the tremendous tongue swelling I regularly suffer.

Back to the rheumy tomorrow. Hopefully they’re open to diagnosing me. Waiting and wondering is wasting my life. At this point I just want to TRY treatment to see if I improve. I cannot waste anymore time feeling like I’ve been hit by a truck. I’ve wasted so much of my life unwell already

My fingers are crossed your mystery is soon solved too 🙏

posted about 3 years ago
A MyLupusTeam Member said:

I wonder, do our doctors really think that we are just enjoying going to them and giving them our hard-earned money, and that's why we ourselves come up with all the symptoms?

I let the Dr. have it, and I don't feel bad about it. I'm a mother, a professional with a job I enjoy, used to have tons of hobbies when I had energy, always stayed on top taking care of myself, what in the world would make me imagine all the symptoms? And I never doubted my intelligence to understand what's in my head and what's not. It is insulting, I agree with you.

My son's dad told me that when his doctor told him the same thing about his neck injury, he replied, "Just because you cannot figure out what is wrong with me, it doesn't mean it's in my head." I need to remember that line!

posted about 3 years ago
A MyLupusTeam Member said:

@A MyLupusTeam Member

I just saw your reply which I had overlooked before.

I’ve been ill since I was 17 😔 I’m 44 now. Back then I stated having an issue where I felt something was in my throat and swallowing became uncomfortable. I started losing weight and my migraines became more frequent. Blood tests came back showing many abnormal results including: low RBC, low WBC, low platelets, high bilirubin, kidney and liver problems and more. The dr was worried I had leukemia or something really dangerous. I spent a couple months going to drs. They couldn’t figure it out and it was determined it was stress causing anorexia and floating kidneys 🙄 I still don’t know why that was their conclusion. Looking back it seems ridiculous, but whatever

Sadly I wasn’t tested for anything autoimmune at that time even tho my blood tests were in line with Lupus

I never felt well again but was healthy & young enough that problems would come and go with periods of normalcy in between. In my early 20s I sought a endocrinologist for pain and terrible fatigue. After a couple years of infrequent visits and testing the endo concluded I had Lupus but being uninsured I couldn’t follow up with a rheumatologist and couldn’t afford the testing. Skip forward 20 years...

Feeling I was on the verge of dying last year I did everything I could to insure myself for this year and rush for a diagnosis while covered. In Jan my insurance kicked in and I’ve been seeing drs about every 2 weeks since hoping to solve this mystery.

So far I’ve seen:
An urgent care doctor
My primary repeatedly
An allergist
An ent
An endocrinologist
2 rheumatologists
A vascular specialist
A kidney specialist

And have gotten:
Endless blood tests for lupus, hereditary angioedema, multiple myeloma, lymphoma and hypothyroid
Allergy tests
An MRI
A catscan
An echocardiogram

Aside from wonky bloodwork, a positive ANA and evidence of dsDNA they’re finding no evidence of physical issues that would be causing my symptoms (like a heart problem, circulation problem, etc)

In January I was already racked up over $10,000 worth of medical bills. Thankfully it was all covered. By now it must be over $30,000. No joke. I know my Catscan and MRI alone were over $10,000!!

I’m praying I can get a dx before I lose my insurance at the end of the year.

That’s my journey with all of this. I’ve seen many people here start treatment with even less symptoms than I’m experiencing. I think my rheumy follows a very strict very clinical methodology. I’m seeing a new rheumy now, my second appt with her is tomorrow

posted about 3 years ago
A MyLupusTeam Member said:

@A MyLupusTeam Member, same exact thing! The ultrasound showed inflammation (goiter), but all thyroid labs, TSH, T3, T4 are perfect. I have negative Thyroid peroxidase, but Anti-thyroglobulin is fluctuating from 3.2 (H) to 1 (Borderline.) Right now, it is high again.

The endocrinologist I saw in the first place believed I have Hashimoto's (she left the practice in February, so I'm now assigned to a different one.) The endocrinologist I had to see for a second opinion told me right away my thyroid is fine, and I need to go back to the rheumy, since she believes there is an autoimmune activity caused some trouble, but it's not Hashimoto's. The third endocrinologist I was transferred to looks like she is not sure. I need to do more research on that. My allergist gave me a name of a doctor who specializes in Hashi only, I'm going to see him somewhere in June just to see what he thinks about all that.

posted about 3 years ago
A MyLupusTeam Member said:

Wow...Sounds similar to what happens with my ear. .it fills and I get pain and pressure & have lost my hearing completely several times...like u do when ur under water...the ear issues, dizziness/vertigo & facial pain were the 1st symptoms I had...2 years ago...that & a rash & mouth sores...i started out with a neurologist & ENT specialist too... neither cud explain the ear thing..sounds to me its inflammation... like u say the lupus🤔 Its pretty bad u try to time ur tests when ur super flared up...but i totally get it. I am thinking the same...i guess thats what happens when ur desperate to prove ur illness.

posted about 3 years ago
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