View Full Version : New and have questions...
03-12-2009, 05:36 PM
I just found your forum and think it's great! I'm a 48 y/o female and have been having symptoms for years but was not diagnosed with autoimmune disease's until 2 yrs ago when I became critically ill. I will try to make this short. I began feeling very tired and run down and thought it was due to returning to work full time and family stress. I got so bad that I could barely make it from the car to the front door without being SOB. I went to the ER where they drew blood and came back 10 min. later with a look of horror and took more. The Dr. came in told me I was loosing blood and I couldn't stay there as I was in critical condition with Hgb of 5 and hct of 10. They sent me to a large teaching hospital in Boston and then began 10 days worth of blood draws and scans and bone marrow biopsy's. My body was making antibody's to my platelets and red blood cells.
Bone marrow biopsy revealed i was making adequete cells and body was destroying them. I also tested positive for LA antibodies and cardilipin antibodys and diagnosed with APS.
I was put on 60 mgs of predisone which did help with the auto immune hemolytic anemia but did nothing to raise my platelet count of 2. Next treatment was Rituxan. Worked slowly to bring my platelets up to about a same 70k. I was diagnosed with Evans Syndrome a very rare blood disorder. They mentioned lupus when I was in the hospital but they said I didn't have a positive ana but met several of the criteria. My last appt with hemo he said he thinks I have lupus but won't diagnose me without a positive ANA. He never mentioned that I should be seeing a rheumie but am thinking maybe I should get my records and go. I also have muscle aches, joint pain with no swelling or inflammation and thinning hair):
Sorry to be so long winded but am frustrated as I am always tired and depressed. My hgb is 11 and my hemo said at that level I should not be fatiqued. Any input would be very appreciated! If anyone is in the Boston area can you recommend a good rheumatologist?
Sorry for being so long winded....
03-12-2009, 05:49 PM
First of all welcome.You have been through it. I would said yes you need a Rheumi, but listen.I am also learning all about Lupus so am not the best person to ask questions about it. But there ARE many lovely knowledgeable people here who will be here soon to help you with all your questions. You just hang in there have a look round the site and know we all are sending you gentle hugs and will help you soon.
03-12-2009, 06:01 PM
Welcome to the board, I am new here and these dear folks have been the best medicine I could take.
IMHO you can never see too many specialists or get too many second opinions. I have a blood disease along with lupus but they are not related.
Please hang around and let us know how you are doing. As far as the fatigue goes, you have been through so much, people don't always bounce back that fast. Keep looking for answers though because you don't want to miss anything.
03-12-2009, 06:05 PM
Thanks Angel for your quick reply. I so appreciate it. I just feel so lousy all the time and sometimes I feel like i'm loosing my mind. I feel like a 80 y/o wmn. I think i will get on the search tomorrow for a rheumie. It was hard coming to terms with the Evans diagnosis and the 60 mile weekly trip for blood draws to the hemo. I'm finally down to every 6 months and to tell you the truth I'm scared to get a Lupus diagnosis and thats why I think I have let it go.
I just think it's going to be another appt. with a Dr. that says well your ANA isn't positive yet so wait and see. What about how I feel like crap everyday. So if anyone out there lives in the Boston area and has a good supportive Dr. please let me know as I have read the forums and seem to seeing the same pattern of responses from them.
03-12-2009, 06:17 PM
Oh i so understand Fatigue as i have M.E Chronic Fatigue Syndrome, but you are going through so much more than i am. Even though you dont see this...but i'll say it anyway ''WHAT A STRONG PERSON YOU ARE!!!!'' Inside i mean.As much as is being thrown at you ...you are fighting all the way.Well done!!!!
You have to know something too. YOU keep the Doctor in a job. So the next time you have to go, dont think of it as a just another visit, think of it as ''THIS TIME I WILL GET RESULTS!'' and tell them what you just told me. Now everyone here knows i am going through some stuff with Doctors at the minute and i so know and realise it's easier said than done.But tonight my advise is this......
Write a little list now you have found us and just jot down...like tonights first is
1. I dont want this to be another ''i dont know'' appointment i need answers NOW and help.
Add to the list until your next appointment. When it gets near to the appointment let us know your list.We will either add some more onto it or just adjust it.Then your appointments with not feel so dreaded but will feel like something you are going to get HELP from.
Hope this helps a touch.
03-12-2009, 06:54 PM
Your so kind Angel and you are so right. My hemo is supposed to be one of the best in the country and don't get me wrong he saved my life. If I had stayed in the local hospital i wouldn't be here. But at several appts. I have asked about lupus from reading the blood disorders related to it. I just get this vague answer of yes I think it's lupus but not ready to diagnose yet.
Great idea about the journals... That is so helpful
03-12-2009, 07:01 PM
We all do them on here. I understand your Doctor saved your life but you need answers not more worries.
My Doctor saved my life so many times with my asthma.But with anything else, lately he has been a total nightmare to deal with.
You are the patient, not him!!!
Im off now as its past 2am so will lie down. Glad you found us.You enjoy posting and i hope we give you some hope if only a little.
03-12-2009, 07:08 PM
welcome, welcome, welcome....wow, what a story. so sorry you have gone through so much, but i am glad that you have decided to take charge of your medical care.
yes, please search for a rheumy. when i was searching, i asked questions to the receptionist. I don't know, but i feel like it helped me find a "good fit" because your rheumy , if you do have a auto immune disease, will be your main dr.
Hope someone knows a good dr. in the boston area....I have always wanted to visit boston.
anyway, i look forward to getting to know you. I am 56, have had lupus for many years (was in remission for about 10). Was diagnosed with fibromyalgia in 1996, and just diagnosed with lupus in october of 2008. I also have atrial fibrilation and am getting an ablasion shortly. anyway, that is my story in a nut shell.
i certainly hope that someone can get your medical :wacko: under control, and keep it that way.
03-12-2009, 09:12 PM
I am going to ditto angel "You are a very strong person" and I applaud you for fighting and continuing to fight. Document everything (date, symptoms, scale of 1-10 of pain), take copies of all to rheumy along with a list of questions to ask. Definately see a rheumy.
I have APS as well as Lupus, Fibro, Chronic Fatigue, Sjogrens, blepheritis, Gerd, etc., but I haven't been to the point you have been. I struggle to work 3.5 hours a day and after 2 hours I am yawning and wanting to sleep. I come home and go to bed for 2-3 hours for an afternoon nap. I get up and still feel tired to fall asleep on the couch.
Prior to getting a Lupus diagnosis, get life insurance and a personal medical insurance prior to the dx. Why? Once you have Lupus on your chart, you will not be able to get insurance of any kind or sort unless it is Medicaid or Medicare and a very long battle for it. If you are positive for Lupus, ask the rheumy to be kind and note it as Mixed Connective Tissue Disease (as this will still allow you to get medical insurance through a private policy). Insurance companies rate Lupus up there with Cancer (I noticed it on an Aflac Cancer policy) and couldn't believe my eyes.
Another suggestion is to check out the Lupus Foundation of America website (LFA.org). There are chat sessions with experts from different areas of the country. Just a suggestion if you don't have a response from someone in the Boston area.
Welcome and I wish you the very best. Keep fighting the fight.
03-13-2009, 04:51 AM
Wow you guys have been through it. Thank you all for your support and welcome. I do have life insurance although probably not enough. I am insured through my husband and am aware that I can never have a gap with insurance as no one will pick me up. I'm so afraid of this lupus thing. Symptoms did start in the 80's with a false positive vdrl test and a 20 week miscarriage. At the time my obgyn asked if I ever had lupus. I didn't even know what it was then. Needless to say he never followed up and I always attributed the symptoms of fatique to children, stress etc.. I will let you all know how I make out with my quest for a rheumie and will try that sight.
03-15-2009, 04:36 PM
Well I did make an appointment with a Rheumy. I'm going to the lupus center at Brigham & Wms hospital. I read up and they have done a great amount of research. I do have a question and thought maybe someone here will know what this test result is. I was looking through some of my old labs and found out my BUN was a 24 and EGFR was a 18. Are these test for lupus? Any info would be appreciated.
03-15-2009, 05:24 PM
i don't have the answers about your lab readings, just wanted to say "good job" sounds like you found a great facility for medical attention.
i am sure others will be along, and your questions will be answered.
03-15-2009, 11:39 PM
Bun is your kidney function. I have to watch this carefully as my Mom is a diabetic along with the fact of Lupus, Sjogrens, etc. It all attacks the organs.
This is what I found on EGFR from webmd in that it relates to cancer.
The experiments also revealed that patients with tumors that give off high levels of a certain growth factor receptor called EGFR.
It sounds like you are doing your research which is what you should do along with a list of questions to ask the doctors.
Keep us updated.
03-16-2009, 05:13 AM
Thanks Mountain & Faith, I really appreciate your input. My appt. is in 3 weeks so I am going to start logging all my questions so I don't forget when I go in there. Will keep you guys posted.