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[QUOTE=aratledge;5219007]I can view my blood test results on my online chart info. The test she did says Anti-nuclear Antibodies, IFA and then FANA Staining Patterns, and the Vitamin D 25 Hydroxy. She tended to think that if I didnt have a rash I didnt have Lupus. The whole time she was looking over my body for a rash. Which from what I understand is not always there in all Lupus patients. I will wait it out and see what happens.
I started taking Vitamin D feel a little more energy. May just be one of those times when I dont feel as bad. Thanks for the info it is good to be able to talk to someone that has knowledge about Lupus. My family just looks at me like I have 3 heads, LOL. I feel like if I had a diagnoses they would understand what Im going through better.[/QUOTE]


Hi Mock, I'm new here, but your story is very familiar.

Short answer re: family.
No, they're probably going to get pretty tired of you being sick unless they're pretty special human beings.
You'll feel guilty and they'll get tired of being sympathetic.

My journey began last year with a Lyme diagnosis w/out test. Treatment with doxycycline ...and a few months of being okay.

Dec., out shopping and my legs felt like I could hardly move them, needed help to the car, horrible fatigue, weak - weakness went to arms, neck and face. Facial spasms, itching, loss of balance and jaw weakness, legs kicking in bed at night, muscle spasms. Sent to neuro for possible MS. Brain and cervical spine w/out contrast came back normal.
Neck and r. shoulder pain, horrible issue walking. I walk like an old lame workhorse and my right foot is in constant pain. I often use a can for balance.

Diagnosed with possible atypical guilliane barre or poss. myesthania gravis.
Tested neg. on the MG.

Symptoms changed! (felt a little nutty at this point because how could things like this keep changing)

Neuro symptoms slowly went away. I was relieved. The kicking and facial spasms were highly upsetting as well as socially untoward! ;)

Left with tingling, extreme fatigue, weakness in extremities, headaches, sun sensitivity, eye fatigue, vision changes, bowel and bladder changes, no rash.
Positive speckled ana. Sent to rheumy.
Low vit D @ 24. Vit B 425.

I felt like I was slowly dying. Sick, muscles hurt horribly at night, no joint pain, right foot pain like it had been hit with a hammer, headaches....rheumy put me on Vit. D. I got B12 injections. Felt a little better, in fact, felt like I was going to beat it and perhaps it was just that my D was low, despite having worked in the yard all spring and summer, eating a diet rich in meats and dark greens, and taking 2K vit D daily....

A month later, the piano hit me again Strange sore throat. Weakness, tingling. Sick, tired, headache - like a flu minus sinus issues and congestion - then it let up a little, okay, thought again, I was healing from whatever....

Rheumy decided to put me on hydroxychloroquine and give me a diagnosis of Undifferentiated Connective Tissue Disease.
Riiiiight. Felt like it was being forced on me.
I was skeptical.

I decided, because I was feeling better to delay starting it - almost a month - and yeah, the eye risk scared me. (that will be fun to explain to her, but I'll suck it up and have to - I'm sure I'm not alone.)

Hit me again like a ton of bricks. Put me down this time.
Broke out in huge red rash on arm. Whole arm ached at night and itched all the time. Coin sized rash on the end of my nose. No mylar, but this rash was raised, read and sort of like orange peel texture. That went away in two weeks- well, almost away, there is still a shadow of it on the end of my nose and the skin still looks odd. Lymph nodes up in groin and arms.

On my arm, after the millions of tiny blisters broke, the skin turned to sandpaper like texture - truly, no better description, and left a scalded looking angry scar.
My primary doctor, who is not worth a floater in a punchbowl, said it was poison ivy. Wrong. I've had poison ivy before and this was not it.
Cortisone cream, calamine lotion, Epsom soaks, lots of tylenol and two weeks helped.

Now there is a similar one on the inside of my thigh and on my left pubic area.
Yeah. Poison ivy?!
Horribly painful and the size of a lemon - same look.

I frantically began taking the hydroxychloroquine (generic plaquenil).
Have to eat with it. Had horrible headache for two days, felt slightly wired, in the bathroom all day for two days, sometimes dizzy, but now starting to feel a little less wired - taking Metamucil and probiotic drink. Stomach a little better most of the time. I'm hopeful.

Have an appt. next month with the eye doctor for a baseline. (soonest I could get).
See my rheumy end of Oct. unless the stomach issue won't go away then am to call for a name brand prescription.

It's been a weird and awful journey. I went through phases of horror, hope, denial...acceptance and a little hope - still.

I have no idea what I have.

I think they ease you into categories until whatever it is progresses to the point it's identifiable and so they can begin to treat to see if they can help you.

Don't think that just because they try to pin it down, it can't change either.
IOW's, if you get a diagnosis, it may change as your symptoms do.

The symptoms I have are in-between MS and Lupus.

I feel fortunate the rheumatologist prescribed the hydroxychloroquine for me to try first rather than wait until I got even sicker or was in more pain.

I'd like to try to stay off of prednisone, but if this doesn't let up, I'll do whatever they tell me.
I'm so tired of being so sick and tired...and the pain is just awful. Deep muscle pain.
I used to be ridiculously strong. Not now - and it's been hard giving in and letting that former person go. Tylenol is the best game in town, or so they say. I find that hard to believe.

One wretched lesson I've learned is that there is a diagnostic 'criteria' that must be met in these diseases and you must meet a certain amount of these check-pointed symptoms before they'll give you a diagnosis, even if they suspect greatly it's something...and then, there are literally hundreds of diseases that mimic each other early on. Unless your tests and obvious symptoms are....well, obvious, you're in for a ride - and skepticism, being a woman.

Very frustrating.
I think the worst is that others don't understand this process and think you're not really that sick because doctors don't just nail something down and write a 'scrip.
I care for my father who has moderate dementia.
Oh. my. god. He thinks if I have a good day, I'm well.
He thinks this generic plaquenil will "cure" me - and then he toddles off to dementia land again and we start the conversations over again.
It's exhausting on top of me being exhausted.

My husband is good in that he doesn't make me feel bad when I can't do a lot of things for us, but he doesn't really want to know about the disease, any progression or talk about planning, sure doesn't want to hear I feel bad too much.

I can honestly say, even with a tag/diagnosis (albeit UCTD with Lupus - like indications), people don't understand - and when some of the symptoms finally hit, they'll come down hard (like the rashes).
Even I thought because I hadn't had the rashes, there was no way it was Lupus or that it was even Lupus like.
I am almost pos. that after my next visit, things will change again more in the actual 'lupus' direction rather than UCTD.

....so the story keeps unfolding.....

I wish the best for you. For us all. This truly sucks.

And now, I may never post again. I rarely whine or complain, and here I've dumped it all out. It's been building for one year, so please sort it as it was intended.


Find the time to take good care of your needs and make your family understand you are sick and they need to be understanding. Forgive them and yourself...and try to heal when you can. I know sounds silly, but I think it's all that has kept me from a meltdown.


Kindest regards and deepest good wishes to all.





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