...the rheumatologist called to tell me that my bloodwork looked normal and that he could not rule in lupus. I know that should be a good thing, but I'm left with no answers and still very ill. He said that the bloodwork did not support any autoimmune diseases. So what do I do next???
I've been increasingly ill for over 4 months now, my sides (costochondria region) ache terribly and sometimes it is difficult to sleep on my sides, I have horrible flu-like pain riddling my body (no fever), in addition I just started having pains in my joints (hands and knees) in the last week. My body aches to go up/down the stairs in my home. I've had really bad allergies and my GP started treating me for asthma because of my difficulty getting a deep breath and constant shortness of breath.
I had a bout of tachycardia on Monday where my heart raced well over 240 bpm for 25 minutes and I had facial tingling/numbness - I did go to the ER and of course the tachycardia subsided before they could record it...
I've had rashes all over my front torso (around my rib cage and stomach mostly) and the fatigue is incredible. I've never been one to take a nap, but in the last 2 months, I don't have even 1/2 the energy that I used to have and require more sleep than ever and even wake up feeling tired....oh, and the migraines...I've had 8 of the 11 lupus symptoms in the last 6 months so I'm surprised that the blood work isn't positive. I did have a "weakly positive" ANA test over 2 months ago but not now.
Without bloodwork to "rule in" lupus, does anyone have any advice?
My next visit with the rheumy is next Tuesday. Does a rheumatologist keep trying to work with you if you don't have any bloodwork supporting autoimmune disease or does he just turn you back over to your GP???
Hi Gina, I've said Ughhh too! Could you share with us what blood tests were done? It took me over one yr, with many visits to the dr before my GP finally walked with me to the lab and ordered the right tests that diagnosed my Lupus.
Tell the rheumie that you have joint pain and fatigue and it is keeping you from living a normal life. Stay calm, but insist that you need to know what is going on in your body & that something is WRONG!
Hang in there. We understand what you are going through, and wish you all the best in your search for answers.
Gina, Like Kidd just wrote, I'd want copies, so I'd know which tests were done.
Some people take years to progress from murky symptoms to lupus. Some end up with other related conditions like "undifferentiated connective tissue disease" (UCTD), which has its own definition. Some end up with "mixed connective tissue disease" (MCTD), which has ITS own definition, too. Some end up finding out its NOT lupus or anything related. Some people actually start to feel better. And---yes---some stay mired. Some change drs.
If he has no name of any kind for what you are experiencing now, then does he have suggestions about other angles to pursue? A condensed way to ask this is, "If YOU were in MY shoes, what would YOU do?"
I hope you post more after your Tuesday follow-up. Hang tough, OK? A lot of us have been caught in this bind. You are not alone! All my best, Vee (I spent 8 years of actively seeking, plus decades of up's and down's prior to that. )
Last edited by VeeJ; 05-26-2006 at 08:48 AM.
Thank you both for your replies and the good advice.
I will get copies of the labs and keep seeking for answers.
I called my GP today because he needs to call the cardiologist to "speed up" my appointment (6 weeks without a dr. referral) and the nurse told me that the GP had my file on his desk and had been working on the phone with several specialists today. That's all I know at this point...not sure if that's good or bad, but at least they're working on my case.
I'll post my labs on Tuesday when I get them and I'll hang tough.
I really do appreciate your help.
Okay, I have copies of the labs, so please tell me if I'm leaving something out or should inquire further on...
Immunology - Serology
C3 114 - normal
C4 22 - normal
FANA Screening - Positive - homogenous pattern
FANA Titre - +1:40 - weakly positive
DNA - Negative
Anti- RNP AB <1 negative
Anti-Smith AB <1 negative
Anti-SSA <1 negative
Anti-SSB <1 negative
All other CBC levels were in normal ranges except for
So, for now, I'm on a double dose of Aleve and a sleep medication to help combat the fatigue. The rheumie took more blood for unusual labs today and is also checking for an abnormal heart muscle protein as well as antibodies related to Lyme disease (I had Lyme in 1990). I'm on my 3rd migraine headache in 3 days, so I take Amerge for the headache.
My greatest fear was that my new found rheumy was going to say there was nothing that he could do for me and turn me back over to my stymied GP...but thank goodness I was wrong. The rheumatologist said that before my labs were back he "was fairly certain that I had lupus". He said today that he plans to treat me with plaquenil anyway, but we just have to make sure that my tachycardia attack last week is not related to whatever else is going on.
Hi, Gina, Sounds like you've got a real live bona fide thinking & searching rheumie. (Yay!)
I think, from what I just looked up, that MPV means "mean platelet volume", a test used in ferreting out reasons for certain kinds of anemia. And low eosoniphil % suggests, I think, decreased ability to fight infections. (The "resources" tab above is a good tool, if you haven't tried it yet.)
I bet your rheumie will see even more with the additional tests he just ordered. But the good news is that you certainly seem to be getting careful & nuanced thinking from your rheumie, clear communication, and the focus & concern you should have re: your recent heart episode. Very glad to read about your progress! Keep in touch here when you can, OK? Take good care, Vee
Hi Gina, So glad to hear that you are getting checked out, but sorry that you are still not feeling well. The only insight I have is to try and keep eating a healthy diet. Sometimes it only takes a little deficit to cause health problems.
I was on a diuretic (water pill) for a year to help with my high blood pressure, but it made me feel so sick. Turns out, after going off the water pill, I found a natural magnesium supplement and now my blood pressure is normal. And I sleep so much better! I don't even take it daily anymore, except when I am under stress. Magnesium oxide & magnesium hydroxide are ineffective as they cannot be absorbed into our bloodstream, so it pays to visit the health food store for the right kind. In my search for health I found that our bodies most important minerals are first potassium & 2nd magnesium. ALL the cells in our body need these to function optimally. So try to take some time to make sure you are getting these two into your diet. Oh, if tachycardia is a rapid heartbeat, I had that yrs ago in the middle of the night--140 beats per min. The dr was called and he suggested to "bear down" like when you try to have a bowel movement. It worked almost instantly. Recently I mentioned this to an ER dr & he confirmed that yes, this is one remedy that can help. This is not to say that you don't need any other treatment, and so please keep following your drs orders. I just wanted to share my experience in case it might help you in a similar circumstance. Take care. We are pulling for you!!
Thanks Vee & Kidd~
Yes, I do think I've landed a very good rheumie and he seems genuinely interested in finding out the answers. The lab tech that took my blood today said "Oh! You're an interesting patient!" and when I inquired as to why I am so interesting, she said that she rarely has to pull these viles that were ordered and was anxious to go "look them up" to see what the doc was looking for.
The low MPV is Mean Platelet Volume and a very low volume is sometimes referred to as Thrombocytopenia. When I searched for the causes of this, SLE was one of the big causes, as is a few other serious conditions. I checked my labs from about 8 weeks ago and also had low MPV then, too.
My cardiologist told me that the best way to stop a long attack of tachycardia is to plunge my face into a bowl of ice! I have a list of about 10 remedies and your suggestion is on the list as well. Thanks for your advice I guess that when you don't have ice around, you can always resort to the "bearing down"
The rheumy said we'll start the Plaquenil after we rule out any other heart conditions. He's also running some more tests to check for antibodies from Lyme disease even though it's been 18 years since I had Lyme...but my current symptoms look similar to the acute/presenting stages rather than 18 yrs of Lyme. He's pretty baffled too but I'm glad he looks at this as a challenge instead of giving up.
He's been fairly careful to say that he can't "rule in" lupus.
Do you think that I'm safe to say that we've "rule out" lupus based on the lab tests/results?
Hi, Gina. Maybe your rheumie is suggesting that lupus is less probable in his mind, as of right now, than it was one round back---but maybe not totally out of the realm of possibility?
The dermatopathologist who teamed up with my rheumie would call & tell me, as he completed his vrs. tests, "Now I'm 80% sure," and "Now I'm 90% sure."
Nothing a dr. ever said to me illuminated so clearly how hard some of these diseases are to figure out, esp. when someone has an unusual form of something, or, harder yet, has something pretty rare that's fooled everyone.
Hope you hear more soon, Gina! Best wishes, Vee (P.S. Between Kidd & you, now I know what to do if my heart races. I know it's serious stuff--I've experienced it---but, Kidd, your suggestion IS kinda memorable! )
Hi Vee! Yes it WAS a memorable night--in that I woke up so uncomfortable & scared, & then soon after was ok and able to simply go back to sleep. I will never forget it (neither will my husband, as it was he who made the phone call!) These boards are so interesting in that we can learn coping skills from each other. Lately I feel like a med student, as I am constantly reading books from the library or researching facts online.
Gina, it is so tempting to look at your tests and say that you must be ok since your tests are negative, whereas mine were so positive. Our bodies are so marvelously complicated that even the drs often don't know for sure if there is a definite diagnosis. So, my advice is to try and be patient while they test you and search for exactly what is going on. You don't want to be taking strong medicine unnecessarily if the dr has to make an educated guess, which then turns out to be wrong. It sure sounds like you are in good hands now. I will be praying for you.
I'm jumping in here because I need some clarification. My sister-in-law got Lyme disease several years ago and from what she told me it never goes away and can cause problems at any point in time as if it just happened. Did I understand her wrong?
Gina, I too am happy you seem to have found a Rheumy who will listen to your continuing symptoms and keep looking. That was a large part of the battle for me, finding a Dr. who would keep looking for the unusual.
As to the rapid heart beat, I have had this off and on since I was a teen. A Dr. taught me in my late teens relaxing method to return it to normal. Take in a slow deep breath, hold it for as long as you can, then let it out slowly. Do this three times and think in your mind, relax, relax, relax over and over. It works. The bearing down thing works too but I'm not certain I would have the strength to get a large bowl of ice to plunge my face into. When my rapid heart beat occurs I feel very weak and shakey so the deep breathing and bearing down are best for me.