I haven't posted for a while and those who have been on this site for years have been extremely helpful and would remember my story.
For those newer members, my middle child was diagnosed with SJS aged 16. She had been unwell for a few months, missing a lot of school. After a referral to an immunologist, and a myriad of blood tests, the blood tests were conclusive proof of SJS. Nearly 12 roller coaster years down the track, and with a few extra diseases added to the list, she's now a mum of 2, coping reasonably well in the circumstances.
That brings us to March 2018, our eldest child, aged 30 comes down with a flu type illness from which she's never really recovered. Full time work gave way to part time work as she couldn't cope. She has extreme joint and muscle pain, fatigue head aches, stomach issues. You all know the drill. She's been tested for nearly everything under the sun, including Lyme (she has had tick bites in the US when working as a camp counsellor in Maine). So far everything is coming back Negative except for an elevated CRP and low iron.
Things got a lot worse last August when she contracted glandular fever. She hasn't been able to work since.
She's currently being treated by my rheumy but hasn't been given a definitive diagnosis yet. He's treating it as an auto immune illness.
Prednisone did provide some pain relief but insomnia was beyond reasonable. She's kind of plateaued on plaquenil so the Dr decided to try her on a sulfa medication (can't remember the name)
Well, her Great grandmother, grandmother, mother and sister are all allergic to sulfa so she was quite concerned to take it. But she followed the Dr's advice and started it.
Guess what, she's allergic too!!
I feel so bad that my gene pool has caused this and now, 12 months down the track we don't seem any closer to finding what exactly is going on. She's just been given a December 2019 appointment date for a 3rd opinion at an immunology clinic. So kind of them to trouble themselves!
Meanwhile, her employer can't keep her job on hold forever.
:'( :'(
OMG! I am sure you know the drill and what supplements and things you can do. But this looks like a good time for me to say them again.
1. don't panic. panic makes and anxiety make the pain worse.
2. don't hold your breath, breathe through your pain.
3. meditate. I would post my quick method but my fingers do not like it this time of day.
Supplements to investigate:
Inositol to mitigate the weather impact on your pain.
Acetyl-L-Carnitine to repair mitochondria cell damage
R-lipoic Acid to remove the debre from the repair.
Tart Cherry Extract to reduce uric acid in your system
Bosweilla and Curcumin to tell your immune system not to attack your arthritis and to reduce your arthritic inflamation.
Cistanshe to increase energy
I hope this helps someone. I am currently looking into a Rife like machine that has the potential to put this disease into remission. I will report later on results. I am not mentioning the name here to meet the no advertising on the forum concept.
Glad to see you here again but not under these circumstances. I am wonder if your oldest daughter could get copies of all her testing and get a referral to a teaching hospital or university for a second opinion.
Sometimes with a second opinion to a reasonable group of doctors all from the same U. or hospital one will be lucky and find something out. So often it takes a lot of eyes to make a diagnosis.l A group of docs may look through all the blood work and one doc may see something that didn't impress anyone else.
It must be so tough to be so ill and get no answers. It may not be autoimmune but most likely it is. Just getting a different look see by new doctors is worth it. I assume that she is writing down in a journal all her symptoms on a daily basis. This is really a sickening thing to have to do but it necessary. Sometimes it can be 2 or 3 symptoms that occur at the same time that can help the doctors see a pattern.'
My thoughts and prayers are with your daughters and with you as you struggle with this issue. Please keep us undated cause we would sure like to hear of diagnosis for her. Irish
Thanks for your replies Joe & Irish.
Joe - Thanks for taking the time to reply with your supplement list. I've printed it off again. Time for me to get googling and track down the supplies.
Irish - Thanks for your kind wishes. We are working towards getting a 3rd opinion.
(She saw a private Immunologist late last year who tested for a couple of other things which came back normal - $400+ later - thanks for coming)
The immunology clinic I mentioned is connected to Sydney University - one of Australia's finest - so they should be up with all the latest thoughts.
I was totally in shock when the she was told the first available appointment wasn't until December.
The mind boggles how a person is supposed to wait 9 months before the 1st appointment with a specialist.
We're going to call to see if she can go on a cancellation list and then look into other options.
It's a worrying time for us all but certainly no fun for my DD1. :'( :'(
Oh, Aussie Mom,
I'm so sorry this is all happening. It is, however, not your fault at all. It's not like we say, 'well, WTH, I'm giving my kids a bunch of illnesses!"
And in my case I'm the only one, so far, in my family or origin and for my two sons (aged 48 and 54) to have an Immune Disorder. Of course, I don't think they were diagnosing Immune Disorders clearly until the 20th Century.
AND, I was going to advise you to get to the best University Medical Center, but that's what the plan is, as I read in your last post.
Sad to say, however, sometimes there is no definitive diagnosis or treatment. My University Immunologist says "We use the tests we have, not the tests we need." This is because not everything is actually known about the Immune System and the conditions that can develop.
I do hope your daughter can be helped. Joe's advice is always the best: Keep Breathing, and aim for a level of patience and acceptance.
You mentioned insomnia related to Prednisone. I'm typing this in the middle of the night because I'm having an extended flare of my immune related problems, so am taking a course of methylprednisolone, and so have insomnia!
It's always something, and then, it's something else!
Regards, Elaine