Hey Julie! Do you have CIDP or did you have GBS! Reason asking is that if you have Lupus this might explain the nerve damage going on meaning you may have CNS Lupus!
I have the Raynauds, the Rash and when I first got sick I saw the borderline ANA’s with a Speckled Pattern.
Lupus causes Hair Loss in some patients, Joint Pain in several joints, Lung Pain, Fatigue, IBS Irritable Bowel Syndrome, Headaches, Low Grade Fevers and a whole lot more. Sounds to me like you have Lupus. Scleroderma normally causes far more worse problems like skin hardening around the fingertips, the lips will get all dry and crackly. Hands will draw up making it hard to move them. You sound more like Lupus. But many patients with Lupus also have Srogrens Syndrome also.
And sometimes a medication you are taking can cause Drug Induced Lupus which will go away once the meds are stopped. Look up Drug Induced Lupus and it will give you a list of drugs that can cause it! You might be on a drug causing Lupus. If not then it looks like you may be in the beginning stages of Lupus.
Need my advice just let me know! Have had this disease a very long time! Can tell you all about this disease! Hate to hear this but I have been suspecting it with you. Just sounded all to familar! Hugs
Linda H

Hey Julie! Cool looking mask! LOL! Well now! Instead of you wearing the mask, I think I would take several of these mask to the Party and make everybody wear one. LOL! Let you walk around with a little freedom for a change. Awesome mask! Hugs!

I got tested for Lupus 5 years showing either nothing or borderline. Sed rates on me have always been normal! All Lupus patients can be different and have different symptoms but we all still have Lupus.
Just curious if you are taking medications besides IVIG.
What list are you taking? Some drugs can actually cause a drug induced Lupus. You may have the labs done and nothing shows up and then a year later you get positive labs. Everything you describe sounds like lupus though!
Fatigue, rash, belly aches, nausea, dry eyes, and thick blood. That has me concerned. Thick blood could possibly mean a clotting problem and some people with lupus can get that.
It took my doctors 5 years to diagnose me. I showed a bunch of borderline positives and still got no diagnoses. But an ANA is indicative of Lupus and a few other auto immune disorders.
Stick with the Rheumytologist. Also, the next time you break out in a rash, I strongly urge you to see a Dermatologist and get a skin biopsy. That might tell what is going on!
Good luck on the labs! Hope you feel better soon!
Hugs
Linda H

Hey Julie! Hmmm! Positive ANA huh? With your kidney’s hurting and filling up in the belly.
Here are some possible labs I would have them suggest to do.
ANA, Anti Double Stranded DNA, ANCA, SPE, C-3, C-4 and a CH 50. And also a GFR.
I know one time before we had mentioned Lupus because of your symptoms. An elevated ANA is still a possible for Lupus. Plus back then you had a rash! I would keep insisting on having these labs I listed for a while. Lupus is very tricky when it comes to labs. Many normal to abnormal and back to normal.
Lupus is very hard to diagnose too!
But it might be possible.
This is bad when a medication gives you a hard time. That Rituxan they are giving me is not fun getting either. I have two more weekly treatments and then I will go every month. Then they will taper me down and stop giving it. If I do better! Hope you get better soon. Hate being sick! Wishing you better days to come.

Hey Julie! Hmm! Think I will pass on that IVIG! But I might not have a choice once the doctor see’s me on the 6th. Ever since I had my thyroid removed I am seeing myself gaining weight. Arfff! I’ve gained 9 lbs and don’t like that too much! Right here during the holiday’s too! The best time of the year for eating things you only see during this time frame! What a bummer! LOL! Hugs

That sleep apnea stuff can do some weird stuff to your body and waking up that many times is not healthy at all. I was at the 25 times per hour on my last sleep study but they said it was not sleep apnea causing mine. Mine most likely because of the thyroid problem or upper airway obstruction that they seemed to notice. Never reaching stage 3 or 4 sleep! Hope he feels better soon!

Hey Julie! Your breakfast was awesome and thank-you for the nice buffet you have today! The drinks are great! Don’t want that hairy dog drinks though. Just something simple today! The ping ponging thing! Me too! All week I have been playing ping pong with myself. Maybe sometime this week I will feel better! Going to take it easy drinking. Think I over pushed this weekend with too many hangovers! 😀

Hey Julie! I know a person too that I can’t figure out how they got on disability either. She had a carpul tunnel problem from her job and chose not to get surgery. Somehow she got disability! I could never figure that one out unless she had a few other problems as well. But this woman travels all over the place. She drives everywhere and takes care of her grandchildren and has a sewing machine and makes stuff for her kids.
The woman today is not showing any signs of illness and I have seen her do more things than I! And yet she gets disability. And I have met a few more on the system as well. I don’t know how they were able to get on it. Not once has this lady been in the hospital or had any surgeries. She just stays home and enjoys her life. Her and her husband travel everywhere, they have cookouts and family gatherings. Parties!
Here I am seeing the hospital all the time, doctors all the time, labs all the time. Can barely drive and have to have a lucky day to do so! Husband on Saturday’s takes me out for breakfast and half the time we eat takeout in the truck because I can’t sit in a noisy place. My grandfather died of liver cancer and he never got to see a check! Not once did he see a check. I had 19 years of work in back then when I got on disability. And never missed a day of work except for when I had my children and went back to work before I was supposed to. I had 3 children back then too! All are grown now! But it was a hard time feeding them and keeping them clothed. We did without alot too back then. Only what we needed and what we did not need never got bought.
I just think it’s not fair to the ones that really are truely sick and they have enough evidence to prove they are disabled and can’t work and actually meet the SSD Guidelines. Those are the ones I feel sorry for. But those that don’t meet the guidelines should be checked out more thouroughly and investigated. Wonder how many they would catch abusing the system. I bet alot!