Finally through a doctors rolled eyes got a blood test......it was positive!

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PJ555
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Date Joined Sep 2011
Total Posts : 79
   Posted 9/16/2011 5:18 AM (GMT -6)   
I have been very sick since the beginning of May.  I had what was to be a simple gallbladder surg on June 1st but it went way different for me.  I ended up with a 4x normal size gallbladder, large hernia knotted in my intestines and stones in my appendix that had to be removed.  I just couldn't seem to recover.  I kept swelling, I mean HUGE.  After 7 days despite my lack of recovery they sent me home.  Two days later I went back to the hosp in congestive heart failure and with protein malnutrition.  I was in the hospital all together 22 days in June.  I keep swelling all the time but now my joints in my legs and knees are just aching along with the swelling.  I take lasix all the time because I am still quite depleated nutritionally but now it is in my right hand as well.  My hand is so stiff it just aches all thet ime.  I am so foggy in my head I get disoriented it is so weird.  It is like constantly feeling like I just woke up and having to get it together.  MY MOUTH let me tell you about my mouth.  It is dry in a way I can barely explain.  I have to have liquid with me at all times.  I panic if I don't.  I cannot speak for long without stopping to take a drink because of the dryness.  I can't swallow some foods when I put them in my mouth because of this.  I wake up about 3 times a night because my mouth is suck shut it is so dry.  I also have lost approx 1/2 of my hair.  I am looking into wigs now because I am pretty sure I will end up needing one.  I asked my Dr about sjorgens, I had Hashimotos since I was 10 years old my son is type1 diab with thyroid dis my daughter had graves dis and my mom has hashimotos dis.  There is a lot of autoimmune dis and they tend to travel in pairs.  Through rolled eyes she agreed to do blood work.  Well my ANA titers are 1:320 so she is doing a further panel and now I am waiting.  Is abdominal pain at all a symptom of any of these autoimmune diseases.  I cannot believe how much I just daggone ache!  I am exhausted I mean internally exhausted.  Regards!

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 9/16/2011 4:57 PM (GMT -6)   
Autoimmune disease can attack any part of your body at anytime.
The dryness does sound a lot like sjorens (sp?), but I'm no doctor so I can't be sure.
The achy feeling and exhaustion is very familar to me.

Make sure your doctor refers you to a good Rhuemtologist.
Joy

aerog8r
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Date Joined Jun 2011
Total Posts : 12
   Posted 9/17/2011 8:26 AM (GMT -6)   
I would say - get a new doctor!!!

Three months before I ever started feeling sick, I lost half my hair too (classic autoimmune sign, I know now). My doc said it was stress. After I got sick, it was a month and a visit to the emergency room before anyone figured out what I had - and he *never* figured it out. At one point I had asked him, Could there be something making my immune system not fight off this virus properly? and he said No, it's just a virus. Agggh!!!

Sorry to rant... I completely sympathize with your exhaustion and your battle to figure out what's going on... but if you really got an eye roll I would find someone new. I'm going to get my rheum to recommend a new PCP.

Good luck to you... hope you get this sorted out.

Christina

PJ555
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Date Joined Sep 2011
Total Posts : 79
   Posted 9/17/2011 8:55 AM (GMT -6)   
Thanks girl! I cannot believe what all has gone on in my life the last three months. It is like a dream, a really really BAD dream. I can't believe how sick I am and how bad I feel. I had a lot of these symptoms before but since I got so ill from this surgery I think it has just really made whatever this is go "full out crazy" I am in so much pain though, I kind of don't understand that. I tell the doctors about the pain and they just look at me like I am a pain seeker. I worked at a doctor office, in fact I had worked for my PCP for two years up until the day I went for this surgery June 1st and we had a lot of trouble with pain med seekers so the doctors are so very suspicious of them but there are people out there truly suffering. They basically just blow me off with all of it and don't even address it. I swell so much from the waist down it isn't even funny but now my right hand is basically stiff as a board. Now that I had this blood test come back the way it did and I have lost 1/2 my hair she is listening a little bit. We (my PCP) used to be really good friends and her mother is very ill with lupus and she had to go home to take care of her just last weekend. I think that is making her pay a little bit more attention to my situation also. I have lost so much through this surgery and illness. The doctors do not care their indifference is amazing. I have always known that they were arogant but this has been over the top for me. I am supposed to start a new job sometime next week and I am super scared about it because I am so sick and weak. I am sure I can pull it off somehow but I just don't know how. Those of you with Lupus or one of these autoimmune diseases how do you deal with the FATIGUE I find it overwhelming. It is a fatigue that is unexplainable. I feel like even my internal organs are tired. How do you handle it?

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 9/17/2011 9:45 AM (GMT -6)   
I'm on plaquenil for my fatigue. It has really helped me feel better. It also helps with the constant ache in my hands and feet. It has also stopped the tendonitis that seems to flair at times in my elbows and knees.
Joy

aerog8r
New Member


Date Joined Jun 2011
Total Posts : 12
   Posted 9/17/2011 4:57 PM (GMT -6)   
PJ - I don't see anything about your kidneys in all this - has your doc checked your kidneys out? I was hugely swollen - belly and legs - when my kidneys were struggling. And completely, totally exhausted.

Chris

jeanneac
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Date Joined Feb 2009
Total Posts : 1914
   Posted 9/17/2011 8:06 PM (GMT -6)   
OMG, you have really been through the mill, haven't you???? You do need a doc who will investigate this and take good care of you!! An ANA titer that high with your symptoms sounds like some sort of AI disease. I sure hope they can figure out what is wrong and get you on the road to recovery. I hate it when docs blow women off like you made up that your body was swelling. I hope you get well soon.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/18/2011 3:05 AM (GMT -6)   
Well let me ask you a question then. Basically this started with stomach issues. I had the gallbladder, hernia, appendix removal and all of the malnutrition stuff followed. However, I am still having such back abdominal pain. They want to do more scopes on me but I am so afraid. The last couple of things that they have done on me have created me such back problems I am afraid to do anything else to myself. And quite frankly their behavior has made me skeptical of letting them touch me. The pain in my abdomen is so severe I cannot even believe it. I have joint pain that is bizarre and unexplainable especially in my right hand and the swelling is getting freakish, we have all been thinking that was because of the malnutrition from the surgery but that is resolving and the swelling isn't. This abdominal pain is horrific. Is that a symptom of Lupus of another AI disease? I was at a dinner last night and had to leave it got so bad. It happens so often and it is life stopping when it does. It isn't just uncomfortable it is "game over" pain. This is the pain that the doctors refuse to talk about. Is this a possible symptom of any AI condition?

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/18/2011 3:08 AM (GMT -6)   
Oh yeah I am going to ask about Plaquenil. I have this huge dilema. I had gastric bypass about nine years ago and I am afraid that some of the meds that I have seen that they treat AI people with I cannot take. I cannot take NSAIDS and I cannot take steroids with much success. I have been having weird liver enzymes in my blood work. I don't think that anyone has checked my kidneys. I am not sure though. I definitely no that my liver has been showing some weird enzymes for months.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 9/18/2011 7:00 AM (GMT -6)   
Have you seen a good GI doc PJ??? I take name brand Plaquenil b'c the generic gave me cramps and diarrhea. If you ANA is that positive with symptoms, it's suggestive of an AI disease. They need to address your elevated liver enzymes too. If you don't like the docs, change them, it kind of sounds like you might need to do so anyway. No doc should roll their eyes at you, BTW....... Take care....
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/18/2011 7:58 AM (GMT -6)   
I did just get a new GI doctor because the first one stopped the surgery that I had in May back in February without so much as sticking his head in my room and saying Good Morning and I am having the surgeon stop the surgery! If he had not stopped this surgery I would not be in part of the MESS that I am in now. I cannot describe to you what he did to me by doing that in February. I don't actually believe in suing doctors but I did consult an attorney but because I didn't die I guess I can't sue him. Or at least it would be difficult. I do need some further tests ran because during the surgery there is a possibility that something went wrong. I am seriously underweight right now and not gaining. I can at least eat now and do have an appetite, That took 3 months to happen. See my albumin level went down to a 1.8 and I swelled like you would even believe it was called Anasarca and went into congestive heart failure I was a complete mess. When I called to tell my surgeon how sick I was he told me to call my PCP yup you read it right he said call my PCP.....I finally ended up in the ER. I was in the hospital 13 days. I work daily with his staff because I work for my PCP who was in Las Vegas at the time but the surgeon was going on vacation so I guess he just didn't want to be bothered. I live in Savannah GA I have also been told I can't seek a law suit because it is a small town. I don't want milliions. I would figure up to the penny what I have lost and not one cent more. The doctor that stopped the surgery in February was smug and arogant and uncaring. He basically has ruined me and at this point bankrupt me. I am to start back to work within one week and I feel so sick ALL THE TIME I don't know what to do. I am so tired I drink 5 hour energy drinks to make it through whatever I have to do but they hurt my stomach even more. I hurt like I can't even believe and then out of no where BAM THE PAIN STARTS. In between there are perks of feeling ok but I just don't know what to do. I feel like I have been off this long maybe I should wait a few more weeks until my diagnosis is a little more solidified and I know what I am dealing with, I can't start a new job and then start asking for time off for dr appts.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/18/2011 1:18 PM (GMT -6)   
Something is definitely off there. Have you considered going gulten free to see if it helps?
I live in GA, too. Have you tried the Augusta doctors? There's some good doctors there.
Joy

jeanneac
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Date Joined Feb 2009
Total Posts : 1914
   Posted 9/18/2011 3:26 PM (GMT -6)   
I live in Georgia too!!! Don't know about Savannah docs but the Bwk GI docs are good except for the one whose name starts with S. I think he is good but he's an donkey's butt. Ask for the doc whose name starts with R, it's something like Ritter. I've heard good things about him and sure wish I had gotten in to see him. Lawyers are supposed to take an oath and if you take your complete medical file, one should be able to tell you if you have a case or not. Good luck to you. Yea, Augusta at MCG should have good docs, so should Emory.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/18/2011 6:23 PM (GMT -6)   
MCG doctors are great! My father's a vet and has all of his surgeries there. He just had part of his toe removed due to cancer in it.
Joy

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/19/2011 7:13 AM (GMT -6)   
I was a referral specialist at my previous position and I had to refer a lot of patients there because they were the only ones that accepted medicaid in Georgia for rheumatology, gastroenterology and now orthopaedics. I was thinking of going there myself lately because I want to branch out of Savannah. It is however a couple hours outside of Savannah and if I got back to work it could make it a little difficult. How disabling is this whole thing. I mean I know right now that I am probably having a lot of difficulty because of the surgery fiasco in June with the whole malnutrition thing. I almost died in June and recovery has been quite difficult. But looking back I have been symptomic of an AI problem for some months now and I think that this traumatic event has possibly really caused what I have learned to be termed a "flare" I cannot stand the fatigue, the aching is only second to the bouts of all out PAIN that comes on in my abdomen. It is controllable ....... right? I am feeling quite concerned right now but I am walkin around in the great unknown. I am supposed to have a lot more answers today. The doctor is supposed to call me today. I had the further panel drawn last Tuesday that they draw after you have a positive ANA so I guess there should be more answers. What about Jacksonville FL though I hear there is a Mayo clinic there anyone know anything about them? I am from Columbus Ohio and they have such good doctors there I feel so scared here now because if you met me I am such a nice person but they treat me like I have offended them or something. It is so weird. I think it is because I am perplexing though. Then I have had gastric bypass as well and that really throws a wrench in things because it limits medication options so much and they take it out on me. I swear so I have been thinking of Jax FL or Augusta. The problem was I worked for the hospital I was going to so I HAD to go to that facility. Because I was either dying or they were killing me LOL I switched to my husbands insurance so I am FREEEEEEEEE now. I can look outside of Savannah. I will update you all if I actually do get some answers today. I am so happy I found you all and I appreciate your feedback. It is so helpful.

jeanneac
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Date Joined Feb 2009
Total Posts : 1914
   Posted 9/19/2011 9:09 AM (GMT -6)   
Mayo is good. That's where I go. I had my surgery there last Nov. they treat you with a lot of respect. They will run tests on you. I've seen GI and Rheumatology there. I think anyone in those depts. is good. I doubt they would roll their eyes at you!! They are cautious and practice evidence based medicine, so it is a little different. Interested to hear how your tests turn out. In Bwk, Dr. Boswell is a good rheumatologist. Some people don't like him and think he is a little gruff but I am ok with him so far. When you are sick, it's hard to find a doc that you like. I find that I am pretty grumpy when I am sick and it's hard to please me until I am feeling better. LOL.....
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/19/2011 4:54 PM (GMT -6)   
Imagine that the Dr didn't call today. She promised that she would call me and she didn't. One thing that I didn't mention is that we used to be best friends. I worked for her for two years and while I did I helped grow her practice 65%. We talked every single day no less than 2 or 3 hours. We knew everything about each other. It is so weird the second I got sick in June she stopped talking to me. It is like she felt like I abandoned her or something. She has a princess syndrome. That is what they used to call it at our office. We were inseparable though. I have been devastated by the loss of this friendship, it has darn near killed me but she is my PCP and expect her to be professional and I just cannot believe that if I had this blood work done last Tuesday certainly it is back by now. When I went in last Thursday because my right hand is darn near stuck and my hair is nearly gone I had to see another Dr and he went to go get her, she came in and "acted" like she was so concerned and was so sympathetic, she even hugged me. She said that she had a note to check for my results on both Friday and Monday. She said that she was going to call me on Friday (which she did not) and she asked me to text her (which I did today) and she has not called. I do not know what to do. I guess I will just call the office tomorrow and leave a message and see if I can get her nurse to call. What a mess!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/19/2011 6:25 PM (GMT -6)   
I guess she felt like you might use your friendship to get free medical advice. Maybe her backing off is her way of becoming more professional and detached?

I lost a co-worker friend when she retired. We used to spend hours talking everyday. After she retired she would talk to me for maybe 5 minutes. In a month she wouldn't return my calls.
I have another retired co-worker I feel is drifting away, now.
Joy

Post Edited (couchtater) : 9/20/2011 5:10:01 PM (GMT-6)


PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/19/2011 6:46 PM (GMT -6)   
Well since she is my PCP not talking to me is not an option, after three months of the cold shoulder I have gotten through and almost over the friendship thing but as a doctor I kind of need her. I am doctor shopping right now for a new PCP I switched to my husbands insurance but I am quite possibly in the middle of a very important medical situation that professionally she needs to address. She didn't have any problem coming in and hugging me to fake caring and sympathy in front of one of her students on last Thursday. Amazing. I don't know what blood tests you run after you have a positive ANA of 1:320 but I don't think it should take longer than 7 days. I would google it but I don't know what the tests were.

jeanneac
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Date Joined Feb 2009
Total Posts : 1914
   Posted 9/19/2011 7:15 PM (GMT -6)   
It sounds like a sticky situation. Maybe it will all straighten out. I hope you get your test results soon. You can find other friends, what you need is a good doctor. Hopefully, she can fill that role of the good doctor. Some PCP's know more than others about AI diseases. You might need a rheumatologist.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/20/2011 5:11 PM (GMT -6)   
My bloodwork took a full month to come back from the lab.
Joy

jeanneac
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Date Joined Feb 2009
Total Posts : 1914
   Posted 9/20/2011 6:05 PM (GMT -6)   
What tests did they do for crying out loud and which lab??? I know they sometimes have to batch unusual tests until they get enough to run them but a month seems a little too long.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/20/2011 7:05 PM (GMT -6)   
I have no daggone idea. I did finally hear from the nurse and I guess some of the panels have come back normal but they want me to see a rheymatologist because I am so symptomatice and my titers were 1:320 and evidentally you cannot go by blood alone. Of course this is coming through my doctors nurse that every question I asked she said I don't know and I am not for sure. So I am going to wait on the rheumatologist. IronicallyI might be going to work at the place that I am being referred to for the rheumatologist. I have so many questions for the doctor (aka my ex best friend) because of how symptomatic I am, like is there something I can take because I hurt all over my right hand is basically stuck but she just refuses to talk to me. I don't know I guess I will just wait on the rheumatologist. She evidentally has such a problem with me personally for some reason she cannot handle me professionally. Good thing I am not dying.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 9/20/2011 7:10 PM (GMT -6)   
Sure hope the rheumy is good to you and gets you some relief. Yea, it's not all about the blood tests. AI diseases can be gray zones........ It drives me nuts too.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 9/20/2011 8:04 PM (GMT -6)   
I can't quit crying tonight I really can't. I know my body and it is mad at itself. I hurt in weird ways. I am so tired and I am going to be bald if I keep losing hair like this. My doctor who used to be my best friend who holds my life and more answers than I have in her hands has turned a deaf ear to my phone calls and my concerns. I am beside myself. Tomorrow I am going to take a proactive approach to my health and FIND A NEW DOCTOR IMMEDIATELY! I kept thinking that she and I could work out whatever was going on but we cannot and even if we could we can't do it in time enough for me while I am this sick. I will take this night to cry and this night alone, but when the sun comes up I will NOT look back. The cross faces forward and so will I. Thanks for your support while I whined but I am NOT going to whine any longer! I will do what I have to do to fix this problem.
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