Hi Lovelies. I've been MIA because I've just been so sick. Sleeping and being sick. Anyone have some advice on what I should do now?
I had a fruitless conversation via messaging with my neuro who went out of the country shortly after he did my testing (QSART, Tilt Table & Valsava). Some history is needed: For over 2 years now, I've had the knowledge that I have both SFN and Autonomic Neuropathy. However, the testing back then, showed very mild in both areas and 5 neuros later, no neuros would own treatment, they'd just tell me it was rheumy related and send me back to my bad rheumies.
For those two years from when I had the testing, I went through a lot of crud and finally found my Most-Awesome-est Rheumy. He searced (thoroughly) for 9 months to find a rheumy who would take on a Sjoggie.
Now, one whole year later, the neuro does more testing, definitely abnormal for SFN, Valsava, slightly abnormal and normal Tilt.
I'm in a panic because, regardless of the Tilt results, my BP, Heart Rate, O2 and nausea are off the charts. Never mind the excruciating pain. I wait for neuro to get back in the country and tell him the symptoms and ask him if I do or do not have the Autonomic Neuropathy because if I don't, rheumy and I have to start from square one. Not only that, but I'm going to have to increse my Prednisone which is what's literally killing me. I need treatment for whatever is causing these symptoms. He writes back (classic) "Yes, continue on your Trileptal. I do not think the nausea and vomiting are from the neuropathy. See your PCP abou that." OH MY!!
Write him back again and basically ask him the same question. Guys, I have Cushing's Syndrome. I've lost at least 15 pounds this past month. I'm not complaining about that, because I've become a cow with this Cushing's, but that's the point: I should be a cow! I can't eat!
Right. So he then emails me back (I want to cry thinking about it) and tells me that no, the Tilt didn't show anything, but Valsava did. Yes, I do have the Autonomic Neuropathy, but "Again" as if I should know this "your symptoms are flaring right now due to the Sjogren's. Dr. M. (rheumy) will most likely have to increase your Prednisone. "
Now, with all of this said, rheumy has been talking IVIG for a year now, but wanted to secure a neuro so as to get his "expert advice" for treatment. He was ticked that neuro wanted more tests and was also dumping it back on my rheumy. No appointment with rheumy until March 5th. He wanted to see me back in two months (which would have been last week) but the receptionist accidentally made it for three.
Should I call the rheumy or suck it up until next month. I WILL have to increase my Prednisone though. I can't continue like this. I know that this is marathon post, but I'm ready to vomit now and im sweating like nuts.
I doubt that anyone has made this far, but if you did, THANK YOU!
Love you all.
~Andrea
You sound more than uncomfortable. Call your doctor. Don't wait. Or let me say this, if I had 1/4th of what you are describing, you would have to hospitalize me.
Call..don't continue to suffer.
Dear cc, thank you so much. I just re-posted this because I realized imposred on the wrong board. The only problem with my going to the E.R. is because the symptoms are so sporadic. The nausea is always there, but vomiting, no. The vitals can be normal after being nuts for an hour... even 15 minutes. Sort of why I have Michigan J. Frog as my avatar.
From what I've read, this is common with Sjoggies and it's why it's so difficult to Dx. There's an article on this site somewhere talking about it. The E.R. may or may not see it. If they do, when it stabilizes, my acute symptoms will be gone and I'll be sent home.
I've been tempted, but I'm not up for the waste of time. However, I kepp thinking that I'm going to have a heart attack.
Thanks again cc. Bless your heart for reading this!
HI Ripvanann,
The things I see is that your symptoms sounds like they are almost chronic. They come and go, and it seems that in a sense is a sign that they aren't a heart attack.
Is there an element like a panic attack in them? Something in your system is triggering wild swings of physical states, which has to be so upsetting! So much research is showing us that imbalances in our immune system is what causes so many problems.
Have you had an MRI to establish that there isn't any thing going on with your brain or spine?
With all of those diagnoses it must be so hard to tell what is coming from what. I know how awful that is.
And you already have Cushing, and yet you're taking prednisone. It doesn't sound like it's really relieving your symptoms, which is pretty much what it does for me.
That is really awful! I wish I knew something to tell you, but I think only your Rheumy is going to be able to manage this for you.
I honestly have no idea WHAT any doctor or ER can do for you that doesn't know your history well. I hope someone here has a clue.
Is it for the neuropathy that your rheumy wants you to have IVIG? Or what?
Please keep us posted. I know it's hard to focus with all that's going on.
Hugs, Elaine
Thanks so much Elaine. Yes, it's definitely chronic and hence the hesitation to bother my rheumy before my appointment. However, he is the one who said that BP meds were in order. Also, my heart rate was not all over the place then. I don't know if between, the whacky BP, HR and O2, if I'm a heart attack risk or not. Seems as though I'd have to be, right? Again, rheumy was counting on neuro to make the call.
Ahhh, panic attacks! No, haven't had a classic, full on panic attack in a good 15 years. Was working in an awful work environment and put on anti-anxiety meds. Found out later that they have the opposite effect on me... Looked like a bug eyed humming bird stuck in a time warp! Anyway, the cause was not only the stressful job, but also the lack of ventilation in our salon. Chemicals from hair and nail product. I was in a corner sort of... trapped in all of it. Once I left that job, I never had another bout of attacks. Have had one or two here and there, but mild and acute.
Yes, brain MRI is normal and my spine is definitely jacked up, but nothing going on that would cause these symptoms. The Prednisone I'm taking isn't going to help the SjS much. This is simply to keep me from going into adrenal crisis. Hopefully, I will get on this IVIG and it will allow me to lower the Prednisone to a normal dose.
Okay, did two replies and I'm needing to go now. I am messaging my rheumy today for sure. You are very sweet and thoughtful Elaine, thank you. Hugs back to you.