Positive ana 1.8 speckled neurologist ordered ana panel positive 19 high anti double stranded dna homogenous I don't understand is it lupus

[KellyRenai]

Hello, my name is Kelly an I'm 40 years old. I'm exhausted all the time some days I can barely hold my head up. I hurt consistently. I have a red under the skin lacy like rash started My upper chest right under neck an has spread under skin up neck an across cheeks an nose gets worse in sun light.My bones grind stick an swell an give out completely I have stage 2 kidney disease with protienuria. Some days I can't lift my arm due to pain an weakness longest was over a month Drs said osteoarthritis. Memory comes an goes. I have svt of the heart. I have had shingles twice confirmed. I break out in hives if in sun more than 10 mins. I can't handle brightness from sun in my eyes as well. I have a band like tightness in my lungs. I have neuropathy an meralgia paresthica there are too many to list lol but my question is a positive Ana an positive for anti double stranded dna with kidney disease an all else that is going on is it lupus?? Neurologist says yes Pcm not there yet neurologist has tried to get Pcm to send me to rheumatologist since January an said if this positive test doesn't get her attention I need to locate another Dr I've suffered for 6 years with issues I haven't mentioned yet.

[panda2]

Oh dear KellyRenai,

That sounds just awful. I'm so sorry to hear of all of this body trouble and all of the many directions you've had to go to get answers. We aren't medically trained so we can't exactly answer your question, but your positive bloods, particularly for double stranded dna, along with many of your symptoms (rashes and sun sensitivity) sure point in the Lupus/autoimmune direction. Are you on any meds such as Hydroxychloroquine, an immunosuppressant, or steroid treatment?

I really hope you're able to get the right medical attention pronto.

Panda x

[KellyRenai in reply to panda2]

Thank You!! My Pcm treats my pain with tramadol an my neuropathy with 1200mg of gabapentin which neurologist is switching me off of to oxtellar xr an trokendi xr. Pcm gives steroids orally an thru injections a lot. I get vistaril for itching. My pcm just truly doesn't think its lupus but I go back next Wednesday to see wether or not she will refer me out an neurologist says if she doesn't I have to locate another Dr.

[panda2 in reply to KellyRenai]

I really agree with your Neurologist, that if your doctor doesn't see the light, you do need to go to a different one as soon as you can. Positive ANA alone with some of the symptoms you mention can be enough to refer to Rheumatology. Add the double stranded DNA (not to mention the kidney disease) and it seems you really must go there, so someone is in charge of you as a whole, not just in bits and pieces. Generally it is Rheumatology that takes the reins for autoimmune/connective tissue disease. Most of us have several consultants in different departments, like you already have, but the umbrella is usually held by the Rheumatologist who directs what the doctor needs to do for you and which other specialist you might need to see.

Like you, I was referred to Neurology first due to sudden tingling in my fingers and toes as the doctor thought my skin manifestations of hives were not enough to go on for Rheumatology first. But in the meantime, just before seeing the Neurologist, my ANA came back positive and I started developing unbearable reactions to the sun. The Neurologist pounced on the positive ANA and said because of skin issues and sun sensitivity too, I needed to see a Rheumatologist instead of him as my main consultant. He was absolutely right and I'm now under the care of a very thorough Rheumatologist, who is in frequent contact with my Neurologist and my doctor.

The question of it being Lupus or another connective tissue disease doesn't actually matter that much (hard to believe, but it appears to be true), because the treatment is nearly always very similar. But it really does matter that you get diagnosed in the right direction, not just treated for each difficult symptom you have separately, so that you can get the right overall treatment as soon as possible. The longer a systemic disease is allowed to run amuck the more difficult it will be to get it aligned again.

Good luck getting past your doctor's ego. : )

Panda x

[KellyRenai in reply to panda2]

Thank You!! I've been having issues since 2012 an its getting worse I have good days I have bad days I have days where holding my own head up is a challenge 4 years ago right after my last child was born I couldn't use my left arm its like it only existed when it hurt I've had vision changes falls a possible seizure bones give away I can't handle heat or extreme cold I've been anemic low low of a 5 for 4 years maxed out on iron my pottasium is bottomed out an I'm maxed out on it as well I'm stage 2 kidney disease I got gestational diabetes in 1999 Dr said it goes away never retested an 2 years later I was positive high8.9 glucose an pushing 1800mg protein in a 24 hour urine Drs said diabetic kidney now my Neuro is like seriously that takes at least a decade why not test lupus then. I'm just ready to get better I feel inflammation inside me an my pcm says its just the osteoarthritis an fibromyalgia an neuropathy an I'm like No its different I just got a diagnosis of a deep seated lipoma axillary Neuro said its another sign I also have nodules I can feel under my skin she says its due to the inflammation bit with the kidney disease an bone disease I'm limited on treatment now with the sun sensitivity for years an hives for years weakness fatigue an the lab work I just want the meds that will make me feel like me I have 4 children a 4 year old son twin14 year old sons an a 18 year old daughter an I'm only 40 I wanna live an I feel decrypted an broken.

[Freckle1000]

Dont loose faith in living again. An SLE diagnosis means medication that can bring your illness under control and a new life. But God. Plesse - dump the - GP. Perhaps a renal specialist should be the one overseeing your care right now.

[KellyRenai in reply to Freckle1000]

Thank You!! I do have a renal specialist I'll see my pcm next Wednesday an I'm going to ask to be sent to see the kidney Dr the Neuro actually put that in his report he wants my kidney biopsied

[leslieliesel]

Rashes FATIGUE pain mostly in hands elbows ankles...last fall I found out I have subacute lupus..I take hydroxychloaquin and my pain is all but gone..rashes I can not let the sun touch my skin anymore, and Fatigue..still awful..after mowing the lawn yesterday(slathered in sunscreen and spf clothing, I floppded down to the ground and stayed there for a while...I do not have speckled pattern...my husband does..he was dx'd with Sjogrens...but what he has and what I have, are not an indication of your DX..I hope you find out soon

[Freckle1000]

My advice for Systemic Lupus generally is to keep away from Doctors who show any signs of not validating what you're telling them. I had a very long and bad run with a shonky Rheumatologist. And this was with a SLE diagnosis. It's easy to fall into the trap of disbelieving yourself when they don't act appropritely or just stare at you blankly.

With me it takes a team of specialists - a Neuro, a Gastro, (a Renal - with a strong background in SLE who's ultimately in charge of my care) and a semi functional GP to co - ordinate all this.

SLE is a controlable illness that can be bought into remission. I know what's happening to you now is terrifying but it will get better and you may even feel better than you have for years once it's bought under control.

The trick is to find a Specialist - whatever discipline they come from who's also a good generalist who's dedicated at least part of their career to studying Lupus itself.

ps. A renal biopsy is the best way to get a quick and accurate diagnosis for all things autoimmune.

[KellyRenai]

Thank You ill keep you all posted Wednesday can't come soon enough an I'm definitely ready to feel somewhat normal 💞

[Freckle1000 in reply to KellyRenai]

Apologies - Got the pmc and rheumatologist muddled. There are excellent Rheumatologists out there who specialise in Lupus.

GP'S shouldnt be diagnosing Fibro ???

Please do let us know how things go !

[KellyRenai in reply to Freckle1000]

I definitely will an I'm not scared of lupus I just wanna be out of limbo an I think the neurologist has done it an if its lupus I'll continue to fight an hopefully get good meds to help me feel better in the process