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Moiraine

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 #1 
Tomorrow is the big day. I finally get to see the rheumatologist.

I have no idea of how this will go. I have a neurological condition  that mimics others illnesses, so symptom wise, it may be difficult to diagnose. I understand that connective tissue diseases like lupus are not always diagnosed on bloodwork alone, so what do you do when you already have a disease that has many of the same symptoms?

The new symptoms and the bloodwork that the neurologist did in early March were enough for him to refer me to the rheumatologist. Something is going on. Either I have a connective tissue disease that he suspects or the neurological illness is getting worse. Either prospect is bad.

The neurologist is waiting to see what the rheumatologist says to send me to a dermatologist to see if I have small fiber neuropathy. That would be a terrible progression of my illness. There is nothing to do to stop it.

As much as I hate the thought of something like SLE, the doctors might be able to treat it. Of course, in treating it, it might make my neurological illness worse? I just hate what's going on here. I feel like I'm screwed either way.

I'm sorry. I don't mean to downplay anyone's illness. I know all who are here are very ill. I'm just scared of what is happening with my health.

Any words of advice, support, or comfort are welcome.




Cakelady

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 #2 
I would go in with an open mind. It can take years to be dx with sle if you haven't already then start writing down your symtoms and any questions you have that way you don't forget anything you might want to tell the doctor.

There are also a lot of rhemys that do not have lupus patients so I hope you checked out the doctor and I don't mean any disrespect I just dont want to waste your time on a doctor that doesn't know much about lupus.

Good luck and keep us posted

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Moiraine

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 #3 
Thanks Cake.

Well, I don't really know any more than I did after see the doctor. He seemed pretty thorough and he was nice. He was also honest. He told me that the symptoms of my neurological illness made things murky as far as AI symptoms.I had already figured that would be the case. Anyway, he did bloodwork and I will know next week.

I waited for months to get in to see him. I will wait for the bloodwork. Everything rides on that for him. It's back to the neurologist otherwise.
Moiraine

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 #4 
OK, I just went on the portal. He's ordered: Complete blood count, sed rate, CRP, C3 and C4, and rheumatoid factor.

What is C3 and C4? CRP is for RA, isn't it?

I don't know about the blood count. I mean, I take iron and folic acid everyday because I have a motility disorder. I'm pretty sure that one will come back fine.
TXgirl

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 #5 
My dr does a CBC every time I see him. My white blood count is funky. Yes he is looking at multiple AI blood work. But keep in mind there is not a positive blood work that DX. "you have lupus". Mostly just a "hummmmm that is interesting. We will start you on plaqnel and NSAID's and see what happens". Which is OK. I would rather have MCTD/UCTD over SLE.

Good luck.
Cakelady

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 #6 
If you are in a lupus flare your C3 and C4 should be low mine is always high.

Write your questions down and ask the doctor why he/she is ordering these test and what do they mean. My rhemy usually orders labs every other month. Lately it's been even harder for me to leave the house and she knows that so I have been pushing back when I do my labs. I have an appointment next week but I saw my rhemy for an "emergency appointment" last week she told me to that if I could not get I done for my appointment then to just have it done by my August appointment.

Write down your questions and symtoms that way you will not forget anything

Good luck and keep us posted

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Moiraine

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 #7 
Well, I went to the appointment. I won't know anything until next week, I suppose. It was one of those don't come back unless you are called back things.

I'm not really sure why he'd order the CBC since I know for d**n sure that I'm not anemic. I take iron and folic acid for the motility disorder that I have and my PCP keeps up with that. It was part of the medical records that he had.

I'm not in any kind of flare right now. If the doctor could have seen me in Feb instead of May things would have been different.

He told me that he wouldn't bother considering a positive ANA as an indicator of an AI.

Also, my neurological illness has too many of the same symptoms as SLE and Sorgren's , so he said it was a murky clinical picture. I figured that it would be. He said that neurologists sometimes discovered things like SLE through the central nervous system and sent patents to rheumatologists. He said it was rare but that it happened. He mentioned a MRI, which I can't have because I have pacers.

I don't know if my neurologist will do anything with this if the rheumatologist mentions it, or if a CT scan would be enough. Guess we will see what the lab results say...but I'm afraid that since I'm no longer in a flare it will be negative.

Have any of you ever heard of finding something like lupus through the central nervous system on MRI of the brain?


Cakelady

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 #8 
I have lesions on my brain and in my lungs. But the brain lesions were found by doing a MRI of my brian. I get one every other year and I get CT scans of my lungs every 6 months
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Moiraine

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 #9 
Oh, I am so sorry, Cake.

I went and read about that.
Cakelady

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 #10 
The lesions in my lungs was caused because I took mexotrexate for my lupus. It caused a lot of issues with my organs
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Moiraine

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 #11 
From everything that I've read on here, it sounds like the treatment for lupus is almost as bad as the lupus. I am sorry for everything that you and Taffy and the others have been through.

Since my symptoms better right now, and the rheumy said that he would not even consider a positive ANA as an indicator of SLE, it sounds like it's impossible to be diagnosed. You'd have to time a rheumy visit with a flare. OMG. And then take meds that can almost hurt you as much as the disease!
Cakelady

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 #12 
That about sums it up. It can take years to get a dx.

Also people who do not have lupus can have a positive ANA.

Good luck

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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Moiraine

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 #13 
Thank you. I guess I will hear something this week.
Moiraine

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 #14 
There was an email notice of a document added to my chart on my patient portal. When I looked, it looked like the doctor added three more tests.
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