Going to Rheumatologist tomorrow, need advice now!! - Lupus Message Board

Luvmypugs · 10-15-2003, 09:04 PM

Hi everyone

I got some really good news today. My PCP had scheduled me to see a Rheumatologist for all of my symptoms that he is stumped on. The appointment was made for March 2004! Well, imagine my surprise when the Rheumy's office called today and said they could see me tomorrow if I could make it. I am so glad because I soooo need to go see them.

I have been suffereing with a herniated disk for about 3 1/2 years and have since had 2 rounds, 3 sessions each, of epidural spinal blocks for the disk. They are no longer working. I have tried cortisone shots, they are no longer working. I have Restless Leg Syndrome very bad, every night of my life. Have tried everything from herbal remedies, to Parkinson drugs to Tonic water with Quinine, nothing but Hydrocodone works.

I also have migraine headaches but not as frequently lately, thank goodness. I can't take Zomig, Imitrex or Maxalt, none of these work. The Maxalt that orally dissolves under the tongue works fairly well if chased with Hydrocodone and I lie in a dark quiet room and rest for a few hours, but that's not easy with a 21 month old little boy

.

And now, my PCP thinks I may have Sjogren's Syndrome or Lupus. My sed rate has been elevated to 50 (normal is 0-20), my iron levels are extremely low. My hair is falling out. My face continues to break out in red pimply rashes, almost like blisters that itches like crazy, I ache all over, I am tired all the time and have no drive to go or do anything. My sleep cycle is totally messed up, or should I say, I just can't sleep well anymore. I don't even want to talk on the phone. The only thing that makes me feel even half way decent enough to function is Hydrocodone. I am now taking 7.5/500 and take 2-3 every 4-6 hours, along with Advil occasionally. I have had the RA and ANA tests done and they both came back negative. But my PCP is worried about all of the other symptoms including the sed rate and I'm tired of feeling so bad all the time.

I have been trying to gather all the information I can on all the symptoms I have to try and come up with some sort of solution as to what's wrong with me. I used to be such an outgoing, energetic person, now I'm not, and I want so much to be again. Because at 34, this stinks!!!

I'm hoping some of you can tell me what to expect from my first appointment with the Rheumatologist and what I need to take with me (if anything). I'm going to sit down and try to make a list of everything that's been going on with me and maybe that will help to. I look forward to hearing from you all.

Take care

Melissa

Airmid · 10-15-2003, 10:11 PM

Hi Melissa, Sounds like you're doing the right things...writing down everything you can. The doctor will do a physical exam, but more importantly, he'll run a boatload of blood test and a unrinalysis (sp?). Let him know about any MRI's, x-rays or other bloodwork you've had done and where you had it done so he can get that info should he feel he needs it.

I'm in a similar position, just finished my first round of spinals for herniated disks...sucks doesn't it, Lupus, RA. You're taking alot of Vic, doesn't that make your stomach hurt? Does mine. I can't even imagine what you must be going through with a kiddo in the house, mine are grown, so I can lean on them to pick up any slack around here. I wish you luck tomorrow, try to give him as much information as you can.

Blessed Be
Airmid

AngelicBrat · 10-16-2003, 12:10 AM

Hi Melissa,

Good luck with your appointment tomorrow! It sounds like you have symptoms that could be explained by an autoimmune disease such as Lupus or Rheumatoid Arthritis. Lots of these guys depend on the ANA and Anti-DNA etc to say whether you do or do not have Lupus. Truth be known, you can have Lupus and not have the positive blood work. Sometimes it takes years and a HUGE flare to make those tests positive.

You asked what you can expect from your Rheumy appointment. Honestly, I would say go in with a completely open mind and just explain yourself. Don't have expectations that he will be the answer, because sometimes it is a long journey. You can still have hope that he clues in! And I really hope he does. Just don't put complete faith in him, just some! LOL Don't try and tell him what you THINK you have because doctors tend to hate that. If you have time, make a head to toe symptom list of everything you are experiencing. Head to toe works well becuase you will remember stuff as you write about all body parts. Your sed rate was elevated for sure- it is a non-specific test that tells that there is inflammation in the body. Do you have pictures of your rash? Try and dig out a picture that shows your rash. Also, make sure you take MRI's, x-rays etc like Airmid suggested. If you have urinalysis that have shown anything odd such as protein or casts then take those too. Anything a bit out of the ordinary!

I always get so nervous with these doctors so I keep my list of symptoms with me to get started. I hate when they ask "Why are you here to see me?" I just freeze! Just relax, and tell him everything that is going on like you did here

If he isn't the "right" one don't fret, there are lots of Rheumatologists out there and you don't want one treating you if they aren't good, trust me! Please let us know how it went, I really hope he is able to help you feel better!!

GOOD LUCK!

~Angelic

BarbaraH · 10-16-2003, 07:40 PM

Hi,

I agree that taking a written account of your symptoms and a timetable of these problems, treatments, tests and results, medicines (effective and not effective), and the names of any doctors you've seen. Have the rheumatologist's secretary make a copy to go on your office chart and you keep the original - you'll need to add on to it in the future and may need to take it to other doctors. I knew I'd found a wonderful doctor when his first words to me were "I read what you wrote" WOW!!

I hope youe new rheumy is the best. As has been said, finding an accurate diagnosis may take time.

I wish you well! Barbara

Luvmypugs · 10-16-2003, 09:08 PM

Hi everyone

Well, I went to the Rheumatologist today and I really liked him. He is very serious in personality but I really felt like he cared and that I will make progress with him.

He asked me 900 questions and took about 5 tubes of blood and said he can definately see that something is going on inside of me. He said I had alot of the symptoms of Sjogren's and of Vasculitis which he said could be minor or severe depending on what stage it is caught in. I just know how bad I feel and I don't care if I have to take a shot a day to feel better, I will! He said my bloodwork would be back by the middle of next week and he would go over it thoroughly and see what he can find and call me.

So, until then, I wait.

Take care everyone and have a wonderful weekend!
Melissa