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elizabeth
11-12-2009, 02:07 PM
I have been diagnosed with RA for a few years, but now it seems more is going on. My ANA is 1/320 and the doctor is talking about lupus.

Is that level of ANA likely to be lupus? I am actually seeing an MS doctor, who is kindly trying to sort things out for me. My Rheumy took me through all the standard meds and told me I had failed them all.

I always hate it when they say I FAILED a medicine? It seems the other way around to me.

I have horrible pain in my spine, back, abdomen and multiple joints. The fatigue is devastating,I am so weak. They thought I had CA because of multiple enlarged lymph nodes in my abdomen.

Does any of this sound like lupus to you? I am not asking for a diagnosis, just what symptoms could be due to lupus.

You all seem so helpful. I have been reading here for a while. i go tomorrow for a lumbar puncture. wish me luck with that.

Thanks for reading, ea

Angel Oliver
11-12-2009, 03:32 PM
Oh goodluck for tomorrow and yes you sound like me and many here.Lets hope they get you a diagnosis soon.I'll be thinking of you tmrw.

lots of love
Amanda.xxxx

mountaindreamer
11-12-2009, 07:44 PM
hi elizabeth. Welcome to our family. I am glad that you have been reading our posts and that you decided to join........I am apalled at your dr. telling you "failed the medications". I have no idea what that is supposed to mean other than he is trying to blame you for his inability to help you feel better. I hope the MS dr. can help. If you have any questions about the different medications that you supposedly failed, or any options that your new dr offers, we will be happy to try to help.........Yikes, so sorry that you have a lumbar puncture tomorrow. I will definitely be thinking about you. Take care and keep us posted.

magistramarla
11-12-2009, 09:05 PM
Hi Elizabeth,
I tested positive to more than one autoimmune issue, too - RA, Lupus, Psoriasis and Sjogren's. My rheumy called it Mixed Connective Tissue Disease.
Perhaps you might want to ask about it, if the doc doesn't mention it.
Good luck with the lumbar puncture tomorrow - doesn't sound fun.
Check back in and tell us how it goes.
Welcome to WHL!
Hugs,
Marla

Serenity81
11-13-2009, 06:15 AM
Elizabeth, just wanted to let you know I'm thinking of you today, too. I hope your procedure goes well and you get some clear answers soon.

I know what you mean about the medications and him telling you that you "failed" them.. I agree, it is the other way around, THEY failed YOU because they didn't help you.

Unfortunately, it's terminology that doctors and insurance companies use to discuss the successfulness of a particular medication when given to a certain patient. I don't think though that they realize all of the time just how their lingo and jargon can effect us. Even being "in the medical field" myself (or soon to be at least, LOL), I don't like hearing things said certain ways. It's fine to write whatever it is you need to documentation-wise in a chart, but some medical professionals need a class on tact and actually talking effectively and therapeutically to patients! I'll um, be getting off of my soapbox for now..
:soapbox1:

Good luck today!

BonusMom
11-13-2009, 07:28 AM
Welcome to WHL! I'm so sorry you have to endure a lumbar puncture today. Please let us know how you're doing afterwards Hopefully, it won't be for naught and you'll get some answers (and quick!)

dsunshine
11-13-2009, 05:51 PM
Hi Elizabeth
Welcome to WHL! I hope you are getting the knews/diagnosis you are looking and wanting finally!

sheribydesign@msn.com
11-13-2009, 09:03 PM
Dear Elizabeth, I am a newbie too. Best wishes sweet baby. Let us know who it turns out. Sher

smokerscat94
11-14-2009, 05:28 AM
Hi Elizabeth,

I too was diagnosed with RA several years ago, kind of lost track of when. I was on Arava for 1yr it stopped working for me. then I was put on Remicade and Methotrexate which worked for almost 9yrs until it quit working in May 09. In July they put me on Enbrel, which I had horrible side effects and allergic reactions too. So maybe that is what he meant to say instead of they "failed on you" My Dr. called it drug burnout. I have been in a flare for over 6 mo now. In July 09 I saw my new rheumy because mine retired. He did a full workup and x rays and told me I don't have RA, I think you have SLE. Ok I said, so now what? He told me his official diagnosis at this time was undifferentiated mixed connective tissue disease. He started me on Plaquinil 400mg and a prednisone taper starting at 25 mg. My flare has been HELL!!! I hurt everywhere it seems like. Also seems like it's one thing after another that just appears when ever it feels like it. I had the butterfly rash last month for 3 days. I know that isn't very long but it helps with the true diagnosis. During the rash I got pneumonia, and almost landed myself in the hospital. I was in the ER for 7hrs. they raised my prednisone to 60mg tapering down by 20mg every 3 days until back to 10. I just saw my rheumys PA yesterday and was told my body was FULL of inflammation. I pretty much knew that cause of the PAIN. She changed my diagnosis to SLE. anyway, she raised my prednisone back up to 20mg with a longer taper. 1 month tapering back down to 10mg. My joints hurt all the time. Now I find out I have tendonitis on top of it all, which she said can be connected to lupus. So I understand what you are going through, I think we all can. I am so sorry you are feeling so poorly! I can totally relate!! We are all here for you anytime you need some support or just to chat. Welcome to the group! Hope to talk to you soon!
Jennifer

elizabeth
11-14-2009, 04:19 PM
Hi everyone. Thank you all for the responses and concern show. I had the LP yesterday and it went ok, but I got the headache associated with the procedure. I have been laying flat and drinking lots of fluid for the last 2 days.

It is a good thing that I have pain meds because they didn't give me anything. This has got to be the worst headache I have ever had. They got a good sample though, so I hope it helps them sort things out.

I don't know how they sort these autoimmune diseases out sometimes as they are so similar and a lot of people don't fit into any convenient category. I guess that it where mixed connective tissue disease comes in.

I have been sick for 17 years really and have had a few different diagnoses. They have used FMS, CFS, RA, myofacial pain syndrome, tendonitis,etc. The only thing I am sure of is that it involves severe inflammation and responds to steroids. Nothing else has helped.

I got the diagnosis of RA from an MRI of my hands that showed inflammatory destruction of the joints. After that, I was tried on most of the RA drugs with no help, but lots of side effects. I am just on 5mg. of prednisone now.

I have told my rheumy that whatever it is, it is involving my spine because the spinal pain is extreme and keeps moving around. Finally, I had an MRI of the brain and it showed 70 demyelinating lesions. That's how I got to an MS doctor. The problem is that I don't fit into the MS box well either. I have been running a fever for about a year now and they cannot decide why, low grade-99.6-100.6.

The MS doctor is working hard and I appreciate him so much. I just don't want to hit another dead end because I am going downhill rapidly. I am having a lot of cognitive issues and that kinda scares me.

Well, it's back to lying down flat again. Thanks so much for your kind responses and thoughts. ea

smokerscat94
11-15-2009, 02:11 AM
yeah the cognitive issues suck! I talk like a blubbering idiot a lot of the time. It's embarrassing to talk to people anymore. I never know what is going to come out of my mouth. So I totally agree with you on the cognitive issues. It is scary! Take care of yourself and know that you are not alone!

mountaindreamer
11-15-2009, 01:26 PM
hi elizabeth, i hope you are feeling better today. You have been through so much and for such a long time. I am so sorry that you have to endure all of this. Anyway, just sending you some gentle hugs for the day.

elizabeth
11-15-2009, 04:03 PM
Thanks smokerscat and moutaindreamer. It is going on 5PM here and I am finally feeling an easing up of the headache and nausea. I am still using meds for both, but at least they are helping now.

I really hope that something good comes from the LP. I would like to know what I am dealing with and find the proper doctor to help me through the maze.

Does anyone here have CNS lupus? Can it cause demyelinating lesions in the brain, like MS? I have looked around the site, but can't find the answer to that one. ea

magistramarla
11-15-2009, 08:34 PM
The cognitive issues are the scariest part for me. Here I am, a teacher with degrees in two foreign languages, and I'm finding myself searching for words. When I was still teaching, my students were often finishing sentences for me, both in English and in Latin! With them, at least I could fake it and make it seem like I was trying to get them to remember a vocabulary word. My hubby often has to finish a sentence for me, because I just can't say the word that I'm thinking of.
It is really embarrassing, and I feel that it makes me look stupid in front of people who don't know me well. I just hope that it doesn't continue to get worse.
Marla

smokerscat94
11-15-2009, 08:54 PM
I agree with Marla! The cognitive issues are really scary and embarrassing! I almost hate talking to people because I never know what is going to come out of my mouth. English, or some foreign language I invented. LOL!! Or just can't find the words at all! My hubby and I hae learned to just laugh at my new found languages, otherwise I would be crying alot.. I do make up some pretty odd words sometimes. It really can be embarrassing!

elizabeth
11-16-2009, 01:15 PM
I have word finding problems too. My husband's mother died of Alzheimer's a few years ago. She would always say "you know" for words she couldn't think of. Now, I am doing the same thing.

People finish my sentences at times because they can't bear to wait for me to find the right word. I also feel lost in familiar places while I am driving. I have lost all sense of direction.

I just called my doctor to ask if the headache should still be so bad and the nausea from the LP. I can wait it out if need be, but I don't want to have a spinal leak and it cause some kind of damage.

Does the treatment help at all with the cognitive issues for anyone?

elizabeth
11-16-2009, 02:41 PM
I just called my doctor to see if it was ok to try and outlast the headache and nausea from the lumbar puncture. She said no, it meant I had a spinal leak and I need to get a blood patch to stop it.

So, it is back to lying flat and I go in the morning for the blood patch. Apparently, they take blood from your arm and inject into the area where they punctured your spine. The blood coagulates and helps to seal the leak.

I really wanted her to say I could just last it out, but she said the body could not produce enough spinal fluid to compensate for the leak and it has to be sealed.

I really didn't want to be stuck in the spine again.

mountaindreamer
11-16-2009, 08:43 PM
oh elizabeth, so sorry about the spinal leak, and having to get stuck again. I hope the procedure works and you get immediate relief.....referencing the cognitive issues, i have found that my "word loss" issues are a lot worse when i am in a flare. When i feel ok, i can usually get through an adult conversation, well sometimes.

pandagirl
11-17-2009, 02:27 PM
I know someone who had the blood patch and it was a godsend for him..best of luck and I hope you get relief. I had a cervical epidural several years ago @ c5/6 and had a headache afterward for days...It is a horrible/nauseating experience that I can say only parallels a concussion.

elizabeth
11-17-2009, 05:23 PM
I had the blood patch today. No instant relief. I've been laying flat again all day and drinking a lot of fluids. The doctor said it works for 90% of people and I should see relief by tomorrow.

Thanks for the kind wishes, Mountaindreamer. As far as cognitive issues being worse in a flare, I don't get any days that are much better anymore.

Pandagirl, that is a pretty good description of what it feels like. It feels like my brain has been bruised and when I stand up, it feels like my brain is tearing away from the sides. Hurts a lot in various spots of my spine too. I guess it is all connected.

Hoping for a better day tomorrow. I hope you all are doing well today.

magistramarla
11-17-2009, 08:04 PM
I'll be thinking about you, Elizabeth. That sounds so painful!
Marla

elizabeth
11-19-2009, 12:48 PM
Wow! I am finally free of the headache. I guess the blood patch worked. Thanks for listening to me whine through it.

I don't think I'll do any more lumbar punctures.

magistramarla
11-19-2009, 08:50 PM
Glad you're feeling better, Elizabeth. Don't overdo it, though. It would be awful for that headache to come back. I sure hope that the test gives your docs some good information and was worth it!
Marla

elizabeth
11-20-2009, 04:23 PM
Thanks for the suggestion not to overdo. I tend to swing from nothing to doing everything and back again. I am still trying to learn the art of pacing myself. I think I am a slow learner.