View Full Version : Need help soon!

03-19-2009, 09:36 AM
Hey guys,

My name is Amanda, and Monday will be my first visit ever with a rheumatologist. I was diagnosed with SLE about five years ago. I have been suffering longer. I am having a very bad flare right now, and until now I've only ever seen my GP. We are having trouble getting the medicines to work this time, and he admits he doesn't know enough about lupus to treat me any further. I have found a rheum in my area and will be seeing him Monday. I'm very nervous. I don't know what to expect, and I would love some advise. I'm having a lot of new symptoms I've never had before, and the ones I have had are getting worse this time around.

Here are some symptoms: of course the "normal" lupus symptoms...EXTREME fatigue, achy joints, rash (esp. on my face), extreme hair loss, forgetfulness,sensitivity to cold (esp my fingers and toes), headaches, swelling, pain, pain, pain...but there are other symptoms that I'm not sure about.

I think they may be CNS Lupus, but I'm not 100% sure of course. Symptoms: Twitches (ticks) in my neck, face, eye, right leg and right arm/hand, numbness and tingling on my right side, word issues (saying the wrong word even though I think the right one), stuttering, mixing up words in sequence, slurred speech, my tongue feels thick and too big for my mouth, dry eyes, lips, and mouth, itchiness, shocking feelings down my spine that make it feel as if I'm being shocked with electricity, uncontrolled jerking (esp. when I'm trying to lay down at night and relax), pain in my spine from the base of my neck to my tail bone, pins and needles feelings in my right side, loss of taste sensation, dizziness (all the time, but esp when I stand up from sitting or laying), urinary incontinence issues.

Okay, I know that was a lot of info fast, but I really need some advise. What type of questions should I ask my dr? Do you guys think I'm right about the possible CNS, and how should I present all of this to the new Dr that I've never seen? I'm so nervous, please help!


03-19-2009, 10:27 AM
Hi Amanda,

Sorry to hear things are so rough for you right now. I have, or had many of your symptoms. The usual Lupus stuff, plus all the odd CNS type symptoms. I was diagnosed with SLE five years ago. About a year and a half ago, I started having twitching, numbness and tingling on my right side, electric shock type pain, tremors, and falls. I also had symptoms of Optic Neuritis. All of this lead me to being diagnosed with Multiple Sclerosis last year.

I'm not saying you have MS. But I am suggesting that if you do have CNS involvement from the Lupus, the treatment I had could help you. I had two rounds of low dose IV Methylprednisone treatments done, and the worst of my CNS related symptoms have improved drastically. Ask your rheumo if he/she thinks this could help you. Or even better, see a neurologist and get their opinion. If the problems with your tongue or throat feel like they are making it hard to breathe, please seek medical help ASAP. I hope you can find the answers you need in order to deal with this. I'm sure other members will be along shortly with more ideas for you.


03-19-2009, 10:43 AM
Hey Rob,

Thanks for the help. The tongue issues aren't making it hard to breathe, just really difficult to talk at times. I, as I'm sure many other people on this forum do, absolutely detest going to the doctor, for any reason, even a simple cold. First of all, because if lupus is in your chart, "it's just your lupus" and then you get the "are you taking your medicine". Yes! I always take my medicine, it's absolutely not helping at all. It's so frustrating. I'm so worried I'm going to go in to this new doctor and he's going to be another one of the "it's just in your head" doctors and I'm going to get no help. I know I'm supposed to stay positive, but it's so difficult when dealing with inexperienced doctors. Hopefully because this is the guy's specialty, he will be more open-minded than the others. Thanks again for the help, I'll mention the treatment to the doctor and see what he thinks.


03-19-2009, 12:53 PM
Hi amanda,

Gentle hugs, so sorry to hear you are in such pain.

Take a moment and sit down with pen and paper.

Make a short clear list of questions you want answered and under that list make another of points you want to remember to mention to the doctor.

This will be your first meeting with this doctor and it's a getting to know you meeting. Be as thorough as you can while explaining your symptoms.

He will put you through a physical range of motion to see how your joints are moving.

He may on this visit or the next visit decide to change some of your medications around. If he does this, get him to explain to you the best ways to take these.

For example, my rhuemy put me on plaquenil...I didn't ask any questions DOH.

When I reacted badly to it, my family doctor suggested another way of taking it to avoid the side affects and it worked like a charm.

Gosh I'm gabby.

As you are in such pain at night, do you use a body pillow to support your legs? It's about a four foot long tubular pillow. You can get them cheap at Wal mart in the pillow section, or any other store that sells pillows.

My feet, knees, ribs and neck are affected. I bout satin pajamas, polar fleece bed sheets, a body pillow and eventually a memory foam mattress. :D I'm a happy camper now.

No cold sheets making my joints ache, I use the body pillow to support what ever is hurting and the satin jammies are so I can turn over at night with out jarring pain. Makes getting in and out of bed easier too.

I wear soft sided knee braces when my knees are hurting badly. Cuts the pain by 50%.

I hope some of this is helpful to you...good luck with your appointment tomorrow and remember the doctor is there to listen and get to know you. So relax and be honest and don't forget your list. Let us know how you make out.

03-19-2009, 01:23 PM

Thanks, that was very helpful. I actually do sleep with what I have coined a "leg pillow". It's a normal size pillow, but it's a memory foam, and i put it between my knees to sleep. Recently, because of the pain, my fiance purchased a bunch of inexpensive pillows and I actually lay on them. (cheaper than a pillow-top mattress for now, we have NO money). All my joints seem to be affected lately. I actually tell my fiance that I hurt everywhere, and he has learned that this really isn't an exaggeration. It's frustrating at times, especially when I'm hurting too bad to go to school. This is my last quarter (we have quarters instead of semesters) before I graduate, and Honestly I'm just trying to make it through so I can get married this summer. My fiance is wonderful, he tries very hard to understand how I feel, but as you guys know, it's something you can't understand unless you've actually experienced it. He's very supportive of me, and makes sure that I rest when he notices I'm pushing myself too hard. He is learning that when I SAY I'm sick, I'm actually a lot worse off than he would ever want. If I admit I'm not feeling well, it means I'm feeling too bad to even pretend to not be sick. It's hard, but it's very exciting to finally be able to see a specialist after five years of suffering. I am on Plaquenil and Neurontin at the moment, but NO change. Usually Plaquenil helps, but it just isn't any more. Are there other options, or am I just screwed?

Sorry I got off topic there, I have issues with that too...hard to make a point sometimes. I think what I was trying to say is thanks for the advise and I have a list of symptoms and will begin to work on the question's list. I'll definitely update you guys after I get back from the Dr. on Monday. Okay, enough rambling. thanks again!


sick n tired
03-19-2009, 04:03 PM
Hey Amanda...I agree with Rob..a neurologist might me who you need to think of seeing, also...especially if you get one of the bugg eyed Rheumo's that just listen to you and doesn't talk..this won't happen right away, though...first time the Rheumo might be nice...or you will be one of the lucky ones to find a caring, doctor who will tell you a neurology exam is in order.

03-19-2009, 04:07 PM
I hope he is nice. The only issue I have with neurologists is that the only one my insurance covers is the one I went to for my epilepsy diagnosis, and he didn't listen to me at all. he was awful and actually told me at first that I was faking the seizures (until I had 25 consecutive seizures in his office with the EEG--flashing lights and I don't mix :)...) So I'm a little reluctant to go see him again. My GP has been helping me regulate my epilepsy since I got the diagnosis about seven years ago. If I could find another one, I might not be so reluctant to see them. Hopefully you are right about the nice Rheum tho...:) Thanks for the comment!

03-19-2009, 05:03 PM
Hi adl011,

What country do you live in? Memory foam mattress might be out of the question, but you can buy polar fleece bed sheets at some stores for a decent price.

I'm in canada, I got a full set of queen size sheets for $40 dollars which is a wonderful deal here.

The thing about polar fleece is you don't get that jarring cold on your joints when you first get into bed, so I can drift off to sleep right away with out hurting and suffering for a few hours.

The polar fleece is actually comfortable for the spring and the fall as well.

03-19-2009, 05:10 PM
I live in the US, in Louisiana. I have a heated blanket, which helps, but when my fiance stays with me, it's really uncomfortable for him to sleep with the electric blanket without sweating excessively. I try not to use it when he stays, but the heat is so nice with my pain. He doesn't stay much, just on the weekends because our schedules are so different right now with school. I'm a senior Psychology major. I'll definitely check into the polar fleece though, are they hot to sleep on? Thanks!

03-19-2009, 06:32 PM
hi amanda,

welcome back to the group. i see you are already getting great answers to your questions.

My advice to add is to take someone with you to the dr. first, they can take notes (and hopefully have a better memory), they can help explain your symptoms (we have word recall issues), and they can serve as a buffer against the new dr. if he/she is a jerk. I so hope you luck out and get a good dr.

good luck, i will send lots of angels your way on Monday.

also, you say you live in louisiana, i am georgia, and i can tell you that the sun is a real issue. please read the "sticky" about "coping with lupus" and learn about sun block and protective clothing. this can really make a difference.

03-19-2009, 07:09 PM

Thanks, I hadn't even thought of bringing someone with me to the visit. That would help a lot. I'll bring my fiance, he's seen me at some of my worst times, so he would be a lot of help. And being in LA, I do have issues with the sun. I try to stay covered, but it's so hard sometimes, especially if I end up being outside longer than I had expected. Thanks for all your help!


sick n tired
03-19-2009, 07:38 PM
Hey Amanda...I sent you a private message..over in the upper right hand side of the screen...I think it is a good idea for you to take someone to your appointments, too. If it is your boyfriend, perhaps you won't be bullied like you were with that assinine neurologist...grrr...I have never heard of such...who would fake a gran mal, or petit mal seizure??? What an idiot...My answer to him would have been " Faking, I wish"

03-19-2009, 09:05 PM
Hi Amanda,

Welcome to the forum and I am sorry you are in so much pain. I was having some similar issues and the rheumy sent me to the neurologist asap. Before I knew I knew it, I had an MRI, EKG, EEG, nerve conductions studies, etc. I have the tingling, nerve pain in my feet which is attributed to Fibromyalgia per the neurologist.

When I kept having vertigo, my primary sent me to a hematologist who ran an Beta Anti-cardilipin(spelling) IGG test and was positive for Anti-phospholipid Syndrome aka Hughes Syndrome. It is where the blood is too thick and can cause a pulmonary or brain anuerism (spell?). I presently take aspirin, and was told that eventually I would be on blood thinners. I was lucky to be diagnosed, but I didn't like the bed side manners of the hematologist so my primary runs the labs and checks them. I won't go back to the hematologist (the best) unless I have a thrombosis event.

Please keep us updated.


I would ask to run a Beta Anti-cardilipin IGG test to rule it out. Is is also very inexpensive. APS occurs in Lupus patients.

I hope you get some answers very soon. Hang in there.

God Bless,


03-19-2009, 09:20 PM

Thanks for your reply. I am most concerned about the nerve junk right now, but only because it's the most un-nerving, for lack of a better word. The pain is really bad, and the flare I'm having right now is really bad, but I really just want to know what is wrong with me. It's such a huge weight off the shoulders just to have a name to put to symptoms, even if it is "just lupus" related. Thanks for the support. I'll let you guys know what the dr. says on Monday.


03-20-2009, 06:50 AM
hi amanda,

concerning nerve questions, have you been tested for fibromyalgia? do you have pain in specific soft tissue areas such as chest, shoulders, back of neck and back of head, in knees, hands, or feet. the fibrymyalgia test is very simple, so if no one has conducted the "touching trigger points" test, maybe you could get the rheumy to do this.

just another thought...hope you are doing ok.

03-20-2009, 10:17 AM
Thanks, I've never been tested for fibromyalgia, but I will definitely ask. I do have a lot of pain when I or someone else touches those places on my body, especially my neck and head. I almost cry sometimes.

03-20-2009, 11:26 PM
Hey Amanda,

It sounds like fibro. Is the pain a shooting burning pain? Check out Daniel J. Wallace's book through the library system "Fibromyalgia for patients and families."

I would definately get tested for it if nothing else to rule it out.

Keep us updated.


03-21-2009, 11:36 AM
hi amanda,

i describe my fibro pain as feeling like someone is holding a lit cigarrette to the spots where the pain is. the location of the pain is very specific, and yes, the slightest touch will make you hit someone. i have almost nailed a couple of drs.....and that was sorta fun.

the pain is so persistent, never lessening, until it eventually takes over the whole area around the trigger points, and then takes you down to total fatigue (dragging feet kind of fatigue).

do a little online research this weekend, see what you think, and discuss with dr. Be sure and keep us posted.

03-21-2009, 03:43 PM
I actually describe the pain as parts of my being feeling like they are on fire. It's a severe burning, stinging, persistent pain. It hurst so bad. I truely does feel like my skin (and sometimes muscles) are literally being burned. I'll definitely ask the doctor about it. Thanks

03-22-2009, 05:04 AM
Hi Amanda,
Welcome to our little home on the net. Im Kasey. I was diagnosed with SLE in Nov. 2007. I also have fibro and a host of other complimentary disorders.
Im sorry that you are suffering so. I also agree that it sounds an awful lot like fibro. Hope you get some good answers and treatment from this new doc.


03-23-2009, 01:15 PM
Well, the dr called me today to reschedule to next monday. He had a family emergency and had to go out of town last minute today. So, One more week before I can go figure out what's wrong with me :S

03-23-2009, 03:45 PM
oh amanda, i can't believe that this happened. oh well, this gives you a full week to think of questions for next monday.

03-23-2009, 03:48 PM
yeah, I am kinda wondering though, is it normal to go into an appt with 4 pages of symptoms? I have a page of questions too. I feel like I may be over-doing it, but even now, I still think of more symptoms to add daily.

03-23-2009, 03:56 PM
i went back in history, remembered the symptoms from my 20s and 30s, made a list, then made another list that started in 1996 to today. it was huge. i put effort into making it very neat, and i made a copy of it for the dr. she thanked me, and put it in file to refer to later. we were able to spend our time on my current flare and treatment.

so even if the list is long, if it is presented to the dr. without overloading him/her with information that requires immediate attention, then maybe your dr. will review later....mine did.

03-23-2009, 04:08 PM
okay, thanks that really makes me feel better. I might type and print the list before the appt my handwriting is getting pretty bad. Thanks!

Angel Oliver
03-23-2009, 05:18 PM
Oh no....but maybe oh yes so like Mountaindreamer said, you now can make your list. Hey 4 pages is nothing.I took with me a book :) He didnt read it there and then though, so make sure you main points are at the beginning, so then you can tell him straight away.Just in case he says he'll read it later.How dare he have a family emergency lol.:skeptical:


03-23-2009, 07:09 PM
I know, right...having an emergency when I wanna see him :)

sick n tired
03-23-2009, 11:12 PM
I just had that happen with a new doctor...I was very disappointed...I know you are, too, especially when your fiance cleared his schedule to be able to go with you.

I am glad you are coming up with all the symptoms. I didn't know to do that when I first went to see the Rheumotologist. I think I was still in shock...So it is great that you can be able to tell the doctor concisely what is going on with you.

03-24-2009, 03:13 AM
Phyllis! What a great idea!!!!! I will start doing that. I have an appointment in a few weeks........

i went back in history, remembered the symptoms from my 20s and 30s, made a list, then made another list that started in 1996 to today. it was huge. i put effort into making it very neat, and i made a copy of it for the dr. she thanked me, and put it in file to refer to later. we were able to spend our time on my current flare and treatment.

so even if the list is long, if it is presented to the dr. without overloading him/her with information that requires immediate attention, then maybe your dr. will review later....mine did.

03-24-2009, 06:15 PM
Hi Amanda,

I am so sorry to hear your apptmt has been rescheduled. The burning pain you describe is Fibro at it's worst.:hissyfit:

At it's best, :no:legs and arms are heavy and painful to move or touch or just rest your hand on your leg.

My rheumy rx'd clonazepam for the nerve pain so I can sleep at night. For Fibro, Zanaflex 4mg (2 tablets before bedtime) helps relax the muscles. These are just suggestions and what has worked with me. Everyone is different, it may not help with you. Another suggestion is to ask for a Kenalog shot to reduce the inflammation. I get Kenalog shots every 3 months to reduce inflammation. It might be something to run by the rhuemy?

Keep us updated,