View Full Version : I'm a suspect- a Lupus suspect
02-24-2009, 08:50 PM
Went to the specialist yesterday- excellent doc and great personality and MAJOR knowledge. He is well versed in Lupus and APS and very thorough.
I have been officially classified as a 'lupus suspect' meaning I have at least 3 of the criteria, but I think dx is 4 or more. Of course I have been feeling great last 2 weeks almost and felt like a complainer going in feeling so well but he did not see it that way and was very old fashioned in a way but excellent- took his time and was really willing to explain everything and answer my questions and my friend who went with me.
We were hit with a snowstorm here in NH the nite before, and decided to drive the 2 hour trip to Boston the night before. Got a great room in Cambridge on Orbitz but got in at 11:30 as we had to do 20 MPH the entire way as we followed two plows side by side!
I forgot my list that I had spent so much time on, but was able to email him today. I know I forgot lots of things, but covered the basics...
The verdict? I have raynauds, and antiphospholipid syndrome (APS) and am a lupus suspect according to him. I joked and said I hate when that happens, being a suspect is no fun! Also received confirmation on Lyme.
He ran a chem50 and ANA test. Not sure what chem50 tests for other than the normal H&H, WBC, RBC...
He said to stay away from NSAIDS, as they counteract the aspirin, but 4G of tylenol a day was okay for inflammation & pain. I have to take an aspirin a day as well. He said they found it is better than coumadin with the APS.
He will call next week to chat as he said he knew I would have tons more questions, and my tests would be back by then. I have started a document of questions already!
Interestingly I have a malar rash and did not realize it as it is quite subtle... I thought it was discoloration of pigmentation on cheeks and forehead (where I see it more). That surprised me. I had seen it but cover it up with makeup usually- glad I wore none yesterday!
He also referred me to a ENT there as one test with a tuning fork thing showed definate left ear issues. The ENT here is insisting no trouble, that it is neurological, but the neuro is insisting it is definately ENT and that test pretty much proved it... So maybe there is hope for my vertigo and loss of hearing spells.
Current plan is to wait for my uterine bx (will have next Monday), stay on Doxy for lyme, 1 aspirin a day and tylenol for pain/inflammation as well as a cream. Also wants me to do Melatonin and possible trazodone. I need to think about that last one as I tired it before and it made me soooo foggy next day. I also have appt with the ENT in Beantown on the 9th and hoping for some answers and relief of the constant ear pain. Continue allergy meds and shots.
He mentioned keeping my LDL under 100 as well. My BP was insane- 140/100. Highest it has ever been.... Need to get the nice weather so I can bike soon.
02-24-2009, 09:41 PM
Wow, Krissy....Sounds like you've had the best new doctor experience in recent history on these boards. I'm really happy you found such a thorough, knowledgeable and attentive doc. That is huge when you're going through all that you are. Sounds like he took the time to go over everything that needed to be addressed. And how great...that he's taking the time to call YOU next week since you might have questions and to go over the results. When does he want to see you again? Which three Lupus criteria did you meet?
I sure hope the referral to this new ENT will help in solving your ear issues. That definitely does not sound like any fun.
Glad you were able to make the long trip in such bad weather and have such good results.
I'm curious....you mentioned having Lyme disease. Do you know how you got it? Was it from a tick? Or are there other ways to get it?
Thanks for sharing your good news...although I know the Lupus is still up in the air for you. But at least you've found a doctor that is experienced with it.
Take care and keep us updated on your ENT visit.
02-24-2009, 09:53 PM
I really do feel I lucked out with the MD after my own bad experiences in past and reading about others on here.
I feel okay not knowing about lupus, as I guess I either have it or not, and time will tell soon enough. I don't feel so scared about things as I did, and glad he said no to coumadin and steroids and really took time to listen and explain things.
I had to have been bitten by a tick, but don't know when, symptoms mimic lupus in many ways (joint pain, body aches, low grade fever, etc) so I have no idea how much is from either and how long i have had this. Not sure which is worse!
I am not sure what 3 criteria he thinks I have- as I have had seizures, malar and discoid rashes, pleuritis and a Pleural effusion, renal problems, thrombocytopenia and leukopenia, and a positive to anticardiolipin......... I think because some were when I was young, he just counted the very recent which I think would be the anticardiolpin, the marlar rash and pleuritis..... I was shocked he called my rash the malar rash as it is so subtle.
I am not sure about another appt, will discuss when I talk next week. He is going to get a HUGE list of questions!
02-24-2009, 10:26 PM
If he's a very experienced Lupus specialist, I'm sure he can pick up the malar rash even when it's very faint. He's most likely seen quite a few of them in his practice. He probably has a trained eye, I bet.
The reason I asked about the Lyme disease is because I was bitten by a tick way back when I was a child...probably 7 or 8. It was a horrible experience...really painful...especially the ways they tried to remove the tick from my back. If you have Lyme disease do you always have the symptoms you mentioned like joint pains and low grade fevers, or do they come and go? Do you have to be on medication for life? If I understand correctly, they can test you for Lyme disease, right? I remember wondering about it for myself when Lyme disease kind of first came on the scene and we really started hearing a lot about it. I wonder if Lyme disease can lay dormant in your system and then trigger an autoimmune disease like Lupus. I was diagnosed with Lupus when I was 18.
Good luck with those test results coming up.....I'll be thinking of you.
02-25-2009, 12:45 AM
Wow, i am so glad you saw such a good doctor. So nice to know there are still good ones out there. Glad you have some answers now and hope you feel better with the knowledge he gave you. I had to laugh at you being a suspect.....not laughing you may have Lupus just the suspect word. Had visions of you in handcuffs being dragged into see the Doctor lol :)
Hope your blood pressure comes down soon and your ent doctor sorts you out. So happy your doctor was a good one :)
sick n tired
02-25-2009, 01:22 AM
What a great doctor's appt you had, Krissy. I have a great Rheumy, too. He is very attentive and doesn't make it sound like I am being a baby, in fact he gets on to me for not calling about things. I have a tendancy to try to tuff it out and get over it with out meds and that is dangerous.
How did he dx the APS without bloodwork? Did you have a clot or something?
I hope the test results come in sooner than you expect.
02-25-2009, 05:45 AM
hi Krissy, thank goodness you have found a dr. with "MAJOR" knowledge about lupps. You mentioned that a friend was with you...hooray for that. I truly believe it helps to have someone there who can take notes, etc.
I truly believe that the reason it took me so long to get a diagnosis was because I answered all questions according to my "present" symptoms. After joing this forum, I realized that the symptoms can come and go, and change over time. I sat down, and thought about symptoms that I have had over the years (even if not present now), and gave them to my dr. She was very kind, and we realized that I had been experiencing many more symptoms than we originally thought.
I am glad you have already made a list, but think back into your past, and try to recall any symptoms that may have been present at one time, but not necessarily present today.
Also, if you feel you need additional insurance, get it now, because one diagnosed beyond "a lupus suspect" you will not be able to increase insurance. ha ha love the title of lupus suspect.....I too can see you being dragged into the dr. while in handcuffs.....
02-25-2009, 07:14 AM
Lori- I would urge you to get tested for lyme! Bug your doc until he/she relents and does it "just to humor you" as my primary did! When I began having the neuro symptoms I knew enough to look at Lyme because my brother in law has had it and it came back again, BAD. You can have it for years and have it keep recurring and it has been misdiagnosed as Lupus, MS, ALS, etc. I am not sure if has been linked to triggering an autoimmune response, but literally any infection can make someone's immune system go haywire from what I understand. I will try to do some research into this for you, as I am really curious now too. Anyhow, just get tested. Don't take no for an answer. There is not a lot known about Lyme- the info is all over the place and MDs are totally in disagreement about it too.
Sick & tired- I brought my previous labs and they were thru the roof, so it was pretty clear I had APS. I have had a PE in the past and phlebitis, But MD is saying not such a huge deal as long as I take that aspirin a day....
Angel- I had the same picture in my head! I was laughing about it and making jokes! Had the MD, my friend, and the intern who never said a word laughing!
Mountain dreamer- thx for the advice about the insurance! I would never have thought about it! My list to the MD went back to when i was a child and had lukopenia and included ALL symptoms, ALL medical issues, and also a family history and my meds, allergies to meds, etc. Of course, I just forgot it at home! I did email it to him yesterday though. The tests can wait, I won't be here anyhow. Not worried about them as we all know ANA can change and MD did not think it was important.
I am heading to CT for the rest of the week to see my daughter and many friends. A mini vacay for me in a way. Hoping to shop in Manhattan one day even if I don't have any money to spend!
PS- this MD has written books on lupus, and been treating since the 1960's, possibly the 50's. He treated "mother lupus" and really has devoted his life to it, for which I profusely thanked him! He goes to worldwide conferences. He co-wrote the book, "In Search of the Sun."
02-25-2009, 01:25 PM
Suspect eh? Reminds of my beginning diagnoses. I was experiencing:
I asked "what the heck?"
sick n tired
02-25-2009, 01:34 PM
Autoimmune phenomenon? I haven't heard that one...I have been lupus like, autoimmune possibly lupus etc...then lupus. My philosophy is if it quacks like a duck and waddles like a duck then maybe it is a duck.
02-25-2009, 04:33 PM
I'm glad you had such a good dr's apt. I recently got to see a rhematologist too. He was nice.. but seemed not so interested in my symptoms and more interested in the fact that I had a negative ANA (everything was fine on my lupus panel) but he said that since my rash, tiredness, nausea, headaches, mouth sores, sore joints and etc has only been going on since beginning of December... the anti bodies and other things havent had time to really produce yet.
So he ordered another lupus pannel and a few other tests.. and a urine analysis and then they did a biopsy of the rash on my face and on my arm.
It's just very bizarre that my tests are negative but I have nearly EVERY symptom of lupus. He also said that he cannot diagnos me with lupus until I have a positive blood test or the skin biopsy says I have it.
Don't get me wrong, I don't WANT lupus, but I do want to know what I have so I can get back to college and feeling better. The plan was to join the military but with all my illneses I can't right now, and if I have an autoimmune disease I'll never be able to join.
I either need to be well to join the military, serve my country, and live my dream all while going to school.... or I have to remain at my parents house (just moved back this weekend because of my being ill all the time) and work a little here and there until I can get a diagnosis and maybe a little assistance with school.
I just wish I had the answers now but my mom said that before she was diagnosed with fibro and raenoids (sorry about the spelling) she felt like she'd never know what was wrong with her and that she was crazy. I feel crazy too but so thankful I found this site because you all keep me holding on.