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My daughter has been going through it.  We are counting the hours until Monday morning and I can start calling some doctors to put some pressure on them to see her urgently.  She had labs done last week and, according to the results and her symptoms, could easily have lupus.  I would suspect this is an intense flare she is going through.  Also due for her depo shot and has had horrible vertigo that we think is part of a continual migraine that has lasted almost a week.  Think her depo shot might alleviate the migraines some, but in a massive search for a rheum. within our insurance plan.  Any help dealing with EDS, Dysautonomia, AND lupus would be greatly appreciated!

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I have EDS pots mcas

my stepdaughter has lupus. First flare at age 16. She had subtle signs... Random facial rash, joint swelling, fatigue. She had adhd and was always on the go. I finally convinced her to go to doc and begged for an ana test. It was positive. That was step one.  She moved in with her mom for months with no follow up care.months later her kidneys shut down and she was lifeflighted to childrens hosp. She had chemo and many meds. She is stable at the moment. This is not to scare you but lupus is serious. I wish you guys all the best. Seattle childrens treated her and were fabulous!

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Hello,

I am a teen myself, and have an autoimmune form of dysautonomia, and my physicians have suspected I may have other autoimmune conditions (Lupus in particular, based on on and off blood tests, rashes, etc.)

I am currently undergoing IVIG treatments, and takign other medications, which have helped dramatically.

Hope you are able to get help for your daughter!

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Thanks Bigskyfam and Ares22!  Spent yet another night in the hospital, no sleep, very little help.  This is a University hospital no less.  Couple of referrals, an appointment in January...are you serious??  Trying to get in to a rheumatologist.  It seems almost impossible.  We live in a very busy city with what, one would think, a lot of options.  But, there seems to be a dramatic shortage of rheumatologists.  At least ones that would even begin to have a clue as to how to treat someone with dysautonomia, EDS, Lupus, etc. 

Her biggest and most restricting symptom is the vertigo.  It's gotten bad.  Also, she's had a migraine for over a week.  Her vertigo and migraines seem to go hand in hand.  Her migraine meds are hardly touching it.  She also has these muscle/tendon/blood vessel spasms.  The muscles grab around her waist and just squeeze, did that to her stomach.  You could hear it growling and see her abs so tight.  Also affects her big scalene muscle around the back of the neck to the front.  It chokes her throat so it's hard to breathe.  The blood vessel spasms act like extremely severe Reynaud's syndrome.  Tendons too.  Like a puppet master is pulling different strings to make her hands and fingers tighten up so much that they feel like they are going to break. 

Hoping and praying to make it through this night.  Thanks for your help. 

Ares22, what exactly are IVIG treatments?  I've seen it on here, just don't know what they are... You kids are so brave!

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IVIG stand for intravenous immune globulin- which is an antibody/protein found in human plasma. My dysautonomia is of an autoimmune type, so this was the treatment of choice for me (along with other medications to manage BP changes and symptoms).

I have reynauds as well, and has caused a lot of circulation problems for me.. but never spasms. 

My main doctors are a neurologist, and an internal medicine physician who focuses on autonomic dysfunction. 

It took a while for me to get my condition(s) under control and manageable. It takes time, trial and errors.. but there is hope!!

I will keep you and your daughter in my thoughts, and please don't hesitate to ask any questions- if I can be of any help, or support let me know.

All the best! 

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  • 1 month later...
On 7/31/2016 at 3:26 AM, DizzyGirls said:

My daughter has been going through it.  We are counting the hours until Monday morning and I can start calling some doctors to put some pressure on them to see her urgently.  She had labs done last week and, according to the results and her symptoms, could easily have lupus.  I would suspect this is an intense flare she is going through.  Also due for her depo shot and has had horrible vertigo that we think is part of a continual migraine that has lasted almost a week.  Think her depo shot might alleviate the migraines some, but in a massive search for a rheum. within our insurance plan.  Any help dealing with EDS, Dysautonomia, AND lupus would be greatly appreciated!

Hi there, Yes I have Pots and lupus. It has taken the doctors about almost two years to get to the bottom of everything but we finally started getting some answers last year. My Blood pressure had dropped to 86/60 and I almost fell in teh shower...went to the ER got admited they called every doctor under the sun to help and they got a hemotologist involved and it was him that said I had lupus so dealing with lupus and POTS togethter is tough because you are not sure what is causing what symptoms. The tilt table test was a easy diagnosis for the POTS and then the blood work for the lupus... I have lots of flares they are worse when it is time for my cycle to start...but dealing with pots and lupus together is hard....I hope that you get some answers and that you can get soem help. 

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Well, it's 9/14, almost a month and a half later, and we finally got someone to listen to us.  It came in the form of a PA medical student that's been working in our PCP's office.  She said, has anyone ever suggested Lupus to you??  I said, no, but we've suspected it for quite some time now.  She couldn't believe no one else had spotted it, (except for our hematologist, also, who had run the initial labs in July to give us some clues). Ran through all the list of criteria, my daughter had all but maybe one.  She's running more labs than most people have run in a lifetime (she'll have to really hydrate first!) and supposed to see her and the doctor back in two weeks before her rotation ends.  I think she must have been an angel!  Oh, and I almost forgot, gave us some medicine to start as soon as we have the labs drawn!

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  • 2 months later...

Have you made any diagnosis progress yet?

I have POTS and Sjogren's, which is closely related to lupus. Also mast cell (MCAD). I likely also have EDS-H but have not pursued a diagnosis. Getting your daughter's autoimmunity under control, if that is her issue, should help significantly. For me, any immune activation triggers my POTS, so keeping that under control is key.

Good luck!

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Yes and no.  She was recently diagnosed with Erythromelalgia (Man on Fire disease).  She is experiencing tremendous nerve pain, the worst of it occurring at rest or at night.  I STILL think she has Lupus or Sjogren's or maybe Scleroderma as with Scleroderma the Erythromelalgia is prevelant.  We are currently working with a hematologist and she is doing her best.  Sending my daughter to a pain clinic, and also waiting for labs to come back for high GAD levels.  This would be indicative of an autoimmune neuromuscular condition called Stiff Person Syndrome.  It's extremely rare and very difficult to diagnose (unless you have the blood test done and it comes out high, then, guess that would be easy!).  My daughter is not only experiencing the Erythromelalgia flares - dilation of blood vessels in hands and feet causing mild to extreme nerve pain - and also severe muscle spasms that render her in a contracture/dystonic posture.  Don't know if we are dealing with one or two things.  Or if one is causing the other, etc....  If the GAD levels come back high, the hematologist will put in orders for IVIG treatments, if it doesn't, she won't (would be tough to get insurance to ok it).  She also has EDS-H, MCAD, and Dysautonomia.  She is on low dose Prednisone 7.5mg (it helps some), and Plaquenil.  Convinced her PCP to give us a trial run on each, as ANA is positive, and younger daughter had some success with Plaquenil a couple of years ago.  The Prednisone, I think, has been instrumental in reducing inflammation that was behind her optic nerves in both eyes and in her optic discs.  I would say that would be a good reason to stay on it for a bit!  Thank you for asking about my daughter!  Any thoughts?  I'm all ears!

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Wow, Dizzy, I am so sorry that your daughter, and you, are going through this. It sounds like a total nightmare! It can take so long to diagnose these things. A good doc will start to treat with the more general treatments regardless, and it sounds like that is what your is doing. I am not sure about scleroderma. I know it has some crossover symptoms with Sjogren's but that's about all I know. From years of being on Sjogren's forums I have never heard of anything like your daughter's case. I really hope that you find effective treatments for her soon. I know that IVIG can be very hard to obtain, but it sounds like it may be warranted in her case. 

hugs,

Nymph

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