Like so many posts that I'm reading, I too am trying to find an answer to my many sudden symptoms. I'm hoping someone can point me in the right direction based on their experience.
1) To start with, I've had migraines for most of my life, but the migraines have increased in the last 12 months, so much, that my GP put me on beta-blockers to prevent them. That's when my trouble started. I was on the beta-blockers from December 15 - Jan 15. My nasal allergies kicked up terribly and I had sinus infections and then diagnosed with nasal polyps for which I was treated with corticoid steroids (Nasonex). I stopped the beta-blockers after having my house tested for mold and feeling like my body was being poisoned and extreme fatigue.
2) The I began having other allergic reactions such a tongue swelling, cotton mouth with a thick white coating on my tongue and mouth.
3) I thought that I was having a tooth absess, went to my dentist who found nothing but I still had pain in lower jaw. I then began aching on the other side as well and my GP couldn't feel any nodular swelling. Instead, when he pressed on the painful area, he said it was my carotid arteries. This pain has persisted for 3 months now.
4) Next I broke out in a rash on my upper torso and diagnosed with urticaria. I was placed on steriods for 5 days which didn't help. I did another week with prednisone and when I stopped, the rash came back. I did another 5 days and now the rash is gone.
5) When the rash started, I began having difficulty breathing as if I couldn't get a good "cleansing" breath, extreme heart palpitations, rapid heart rate, and constriction in the chest. I was diagnosed with adult on-set asthma and am now on another corticosteroid inhaler, singulair, and albuterol. I am athletic and have never smoked.
6) In the course of 8 weeks, I lost 15 lbs (down from 130 to 115 lbs even while on steroids!) without trying.
7) I have pain in my lung area (in the lower rib cage area), extreme fatigue (I've been a very healthy person until now) and pain in my upper legs and oddly enough, in the bones of my forearms (not muscular and not in a joint)
Since all of the symptoms (after Jan.15, 2006 when I stopped taking the beta-blockers) I have had blood tests that were normal but had an ANA test that was "weakly positive" with a reading of 40 (but I was also on steroids at the time which can throw a false-negative)
I am now being referred to an Arthritis and Rheumatology Specialist and am also scheduled to see a Pulmonologist for the new asthma. I know that beta-blockers can induce asthma and can even cause drug-induced lupus, but I've been off of them for 3 months and were only on them for 4 weeks.
So, can someone tell me
1) Has anyone had a similar experience and what did you do?
2) Does it sound as if I am going to see the right specialists?
3) Does this sound like SLE?
4) What else should I ask my doctors?
I'll continue to read all of your threads and thank you all for sharing your information with people in need of information.
I have an appointment with my GP tomorrow. Does anyone have any advice or suggestions as to what I should ask the doctor to look for?
I have not yet been diagnosed with anything but asthma but I am pretty "in-tune" with my body and I KNOW that I am not well. I'm mostly being asked about stress in my life and if I feel depressed. My answer is no, I don't have any new stress and no, I am not depressed. I am however very concerned about not knowing where this illness is coming from.
Gina, I think (but I'm no dr.!) that you're doing the right thing by seeing a rheumie. A really aggressive & good one will take a thorough LIFETIME medical history, review old labs & biopsies, and re-do everything to get results from labs of HIS choice. Also, he'll order the whole gamut of tests, not just stop at ANA & wait for things to develop. He'll ask lots of questions & let YOU answer.
When I finally took myself to a Manhattan rheumie specializing in lupus (etc.), it was night & day from the local one ( & other specialists) I'd seen. He did all the above, PLUS send me to a dermatopathologist for one last skin biopsy. There were more surprises from the d/p. He had me call my old labs and ask that previous full reports (not just cover pages) be sent to him. Also (weirdly), the old labs keep the leftover parts of skin punches for something like 7 years. He had those sent to him, and he tested them all over again. His findings? All but one had been "grossly positive"---and these were done over a 5-year period.
The d/p asked me questions about my rashes that 4 or 5 previous dermies hadn't thoroughly covered. Location? Speed of development? Time of year?Itch? Burn? Change shape? Stay in same place or move? Frequency? Sun exposure? Scars? Hair loss? But the question that none had asked before was really the key one: How I'd felt as they were coming on?
Just curious about what you had Dx'ed as urticaria: was this the result of a skin biopsy? I ask because my rashes were on torso & upper arms. For 4 years, they looked like raised welts. Next 4 years, the welts would reappear and then expand into red-rimmed circles, before expanding and fading without scarring or depigmenting. Barely itched and didn't hurt. It turned out to be a classic annular (circular) SCLE rash, and my other symptoms were also classic for the SCLE "subset" of lupus (positive anti-Ro, etc.)
As I reread this, I'm thinking: why couldn't my local drs. have done most of this? And I'm betting, no reason---they could have, and fairly easily. Anyway, good luck & I hope you post back with updates, when you can. Sincerely, Vee
Thank you so much for your reply and sharing your experience. I am seeing a rheumie in Charlotte, NC (great reputation) but I've never been to a rheumie before and have no idea what to expect.
The urticaria was not diagnosed from a biopsy, only from sight. It resembled hives, but the GP said it definitely wasn't hives. It popped up suddenly overnight, covered mostly my front torso and the GP also thought it resembled pityriasis rosea, and lasted for nearly 3 weeks. It itched mostly at night but I also itched all over my body (crawly skin) where I didn't have any rash. The rash has been gone for about 12 days now.
I'm still reading about the different tests (i.e. anti-Ro levels???) and what I should be aware of.
Thanks again for sharing your experience as it helps me understand that this is not an "easy" diagnosis.
I wish you all the best.
Gina, There are only *two* autoantibodies that are so 100% lupus-specific that, when found, they create a "checkmark" on the "4 of 11" ACR list of lupus criteria. These "sure-fire" autoantibodies are anti-DNA & anti-Sm, both of which attack the cell nucleus.
BUT---there are a raft of other autoantibodies---and complement levels, etc.---that *can* be seen in lupus & thus raise the red flag. The problem with this large-ish grouping is that each can also be seen in diseases OTHER than lupus, as well as in lupus. Anti-Ro is in this category. It attacks cytoplasm in cells. It's seen in SLE, SCLE (a "subset" of SLE)---but in Sjogren's Syndrome, too.
Check out "sticky posts" at the top of the Board. The one about TEST RESULTS has a link, which will take you to a whole raft of lupus articles by a well-known rheumie.
I just had this same kind of chat with a dear friend from childhood. She tested positive for Rheumatoid Factor a few years back. Her drs. told her right off that (1) RF was positive in many people with RA (maybe 80% or so?), but that (2) RF was ALSO positive in maybe 20% (or so) of people with lupus. She blurted out, "NO FAIR!" Which is exactly how most of us feel, I think, to be trying to get a Dx where key diagnostic features are not a 100% correlation.
Thanks for that tip. I've now read the posts that you've referenced and I'm learning so much here.
I have a stupid question...
Did at any point, did you ever think that you were having such idiotic/strange/unconnected symptoms that you doubted what was occurring? By this, I mean, I'm having such wildly "unconnected" symptoms and strange pains and abnormal reactions, that I'm confusing myself.
The Docs are asking me about stress in my life and stuff that I just don't think is the cause since I'm very "in-tune" to my body due to being constantly aware of possible migraine triggers.
I guess I'm starting to doubt myself because the doctors so far aren't finding too much.
I did ask for a copy of my CBC today and Heart Tests. Even though the docs told me everything looked "normal", I did see that some blood levels (particularly % relative to WBC) were not in the normal ranges and that my Heart tests did show that I have "Non-specific ST segment and T Wave abnormalities" as well as some regurgitation from the mitral and tricuspid , as well as a "click" in the intercostal border midially.
I don't know exactly what this all means, but I know the docs told me everything was normal and this doesn't sound "normal".
I also found when reviewing the CBC that I have High PMN%, High ABS PMN , Low MPV, Low LYM%, and Low BASO%.
Q: Will a Rheumatologist tell me this is all normal, too?
I feel like I need a course in routine diagnostics!
I'm seeing the Rheumie and the Pulmonologist in 2-3 weeks. Any more suggestions for reading material?
I felt the confusion for years! I spent 6 yrs in Japan; some as a Marine and some as a spouse when I got out and he was still in.
I had problems w/ joint pain and could not run... needless to say I was medically separated from Bursitis of the Hip.... I got to Jacksonville, NC and still problems.. major ones, the rashes on my hands began again (had them years before and they came and went...they thought I was allergic or sensitive to the CLP we used to clean our M-16 while on the rifle range.. . no... it was the sun rash... I was in the sun ! sooo.... I have migraines; joint pain and swelling, chronic fatigue, etc.
I found a doc that put it all together and said; hmmmm I think .... and sent me to a rheumy... I don't have the blood tests that are positive but we're keeping an eye on it.
the confusion and feeling like you have sooo many symptoms and all that just what I went through.. I didn't want to have lupus and we still aren't sure I have symptoms but not positive blood work but my rheumy said he is 95% sure I have SLE... ok.. I can live with it... my mom has MS and she has a theory that she rules her disease; the disease does not rule her... and I agreed.
But it seemed like I had meds all the time... and that I was constantly complaining and all that.... and now... it's nice to know I"m not nuts!
Gina & Jen, A big DITTO from me, too. I was afraid I was creating my problems in my own head---as several drs. had insinuated---and that did not sit well with me, as I consider myself to be very rational. So I took myself to a therapist for a year and ended up poorer & only marginally wiser.
Keep believing in yourselves. After all, you are the only people who can work through your medical issues. It's not as though doctors call us up & invite us in for a chat. We have to take the lead, else nothing happens. So hang in there! Best wishes, Vee
Vee & Jen,
Thank you. I'm a 38 yr old business executive and I'm very "sure-footed"...or at least until now because this illness is so far outside of my domain of expertise. So, I'm going to treat it like I would at work when I have to investigate some new regulation or requirement...I'll arm myself with knowledge. You both are helping me to do just that.
So, today I went to the library and checked out a few books including the authors that you recommended, Vee. One of the books almost quotes your previous statement verbatim..."You must take the lead as no one else will for you". This I can do. I have to add that hearing from others like you "validates" my experience and helps me feel like I'm not going crazy. I really do hope that I don't have this disease but having support to help me find the right answers and support from others who have gone through similar situations helps take a lot of stress away. Sometimes it feels like no one is really listening, so it makes me question myself. From what I'm reading on this board and in the books, this appears to be normal.
I'm now putting together pieces of symptoms that I've had for a few years that I've dismissed because I didn't have a storm of symptoms all at once or at least not until now.
Thank you both for helping me through this.
Can you tell me more about your hand rashes?
I never made the connection with the skin condition on my hands until your reply.
Can someone tell me if they've had similar symptoms to mine?
Here they are...
About 5 years ago, I began having red blotches on the palms of my hands. The blotches then turned into circular/patchy peeling of the skin. They would get very red at times but not much itching at all but more of a "warm" feeling. No swelling either. The flare ups would last about 2-3 months each, disappear for about 2 months and then reappear again. I saw the doctor about this and they just gave me a glycolic lotion, which didn't really help. This was a constant condition for the last 5 years BUT (there always seems to be a but ) the condition cleared up around December and hasn't appeared now in 6 months. Oddly enough (and I use the word "oddly" way too much lately ) this is when the onset of all these weird breathing, rashes, heart racing, itching, fatiguing.... stuff started...just no more hand blotches (which I'm thankful because it was very ugly).
Can anyone tell me if this sounds familiar?
I'm wondering if this is connected.
Gina, I started reading & researching when the hospital radiologist doing a kidney function test on me let the cat out of the bag, by using the word "lupus". My local GHP and vrs. specialists had never let on. Pretty insulting, to be treated like a 2-year old. And, like you, I was also from the business world & fully expected forthrightness.
Some drs. are appalled & downright outraged if you mention reading, the Internet, etc. Maybe you want to keep your cards close to your vest on such things, at least until you get a "read" on a given dr.? I became very cagey, which is actually downright ridiculous when you consider that you are SUPPOSED to converse freely with your doctors.
In total contrast, the Manhattan rheumie to whom I switched complimented me on my grasp of what I'd read & digested---thought I'd done a better job figruing out my problems than my local drs. had. He was as disgusted as I was with what he saw of my previous "care"---and told me so in no uncertain terms.
I've never had red areas on my palms---sorry. I'm glad, too, that you found the group here. Bye for now, Vee
Wow! Thanks for the advice. You're right, I would expect forthright information and discussion, but I can see from my past experience where some doctors are better with that than others. I had to ask my doctor to run a CBC and screen for ANA because until then, they were "trying this" and "trying that" by way of medications (nearly all of which I kept having reactions to) all the while I was being dosed up on steroids, and no blood tested.
When I was in the hospital last week, a Nurse Practitioner who was very communicative and a good listener made a statement to me that somewhere over the years, medicine has moved away from "listening" to the patient and that "listening" has been replaced by medical tests. He was wise enough to point out that there needs to be a better blend of listening to the patient, studying all the history and using testing and none of those things are effective in isolation. I agree.
I'm so glad that you were able to find a specialist that you share a mutual respect. I hope that I will be able to do the same.
Gina, Steroids without bloodwork?---my drs. would faint if they heard that. What if the thing(s) that define what's really wrong become masked? Or the consequences become worse than the true underlying problem?
My current drs. are very into testing and tightly controlling the process. My teaching-hospital rheumie re-did everything, ordered additional tests not always available in smaller practices & labs, used the labs of his choice, etc. (I understand that labs differ in what tests they can run, accuracy, etc.) Ditto with the dermatopathologist he sent me to---who literally did all HIS work HIMSELF. (A dermatopathologist is, by definition, a dermie with an additional speciality in pathology, so he does his labwork himself.)
Speaking of dermies & skin, have you heard of the lupus band test? It looks for immune "junk" deposited under the topmost skin layer, both in sun-exposed areas & in areas without sun exposure.
Have you read yet about just how many "variants" there are in lupus? I ended up in what my drs. colorfully described as a "subset of a subset". I have SCLE, which represents only a small (and usually milder) segment of SLE. Further, I tested positive for anti-Ro but NEGATIVE for ANA; and this is the minority ANA finding within the SCLE group. There's a psoriasiform SCLE rash, but of course I instead had the annular form.
When I first read about lupus, with my local drs. telling me I couldn't have it, I thought they were right. Negative ANA. No anti-DNA or anti-Sm antibodies. No malar facial rash. Kidneys OK (except for those stones ). Early on, I didn't know either about the "subsets" and all the "variants". And I didn't realize that having symptoms other than the most "classic" and worst ones could stymie the drs.
I kept a list of drs. in my files, from a NYC magazine that publishes yearly a "best drs." list, by speciality. Then I waited until I had another big rash starting. I had a "Plan B" on file, in other words.
Just wanted to share some ideas, in hopes that something here might help you ramp up if you need to. Hang in there, OK? All best wishes, Vee
Can you tell me how often (in your case) the rashes appear/reappear? My rash disappeared about 2 weeks ago but last night & this morning, I was itching again on my torso & neck/scalp/legs- but I don't see the red oval spots this time or at least not yet. Is the rash, for you, the first big sign of a flare and how long does a flare usually last?
I'm wondering if I should go into the GP for a skin test if I break out in a rash again? My first rheumie appointment isn't for 2 more weeks and I don't have a dermie.
Also, I'm curious about the facial "butterfly" rash. When I went on the medrol pak and the torso rash was not clearing up, I made a comment that my complexion was "glowing" though and my elbows are now soft. I said this because I had a really pink glowing cheeks and nose, but I wouldn't have called it a rash. It only lasted about 3 days. Am I stretching???
By the way, Vee, I love your name. My sister's name is Violet, but my daughter's call her Aunt VV.