OK now I am really confused???

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kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 1/28/2008 1:07 PM (GMT -7)   
Hi everyone it has been a while since I was here.
So this is the issue. Started seeing new Rheumo doc a year ago and since seeing her my ANA has been negative. My first Rheumo doc did my ANA every 6-12 weeks for a year and it was always positive and often would rise. He diagnosed me with sjogren's and Mixed connective tissue disease. Now understand that I had my last positive ANA 2 months before I saw my new rheumo doc and had the negative ANA. I did not feel better in fact I felt worse. She began to treat me like many doctors do to woman with autoimmune diseases like I was crazy and it was all in my head. In Dec. 07 I suddenly had blurred vision and was seeing smoke and dulled colors. I went to the primary doc who sent me to ER where they did multiple labs, CT of head w/ and w/out contrast, and a lumbar puncture. for reasons of keeping this post short I will tell you 4 day in the hospital 2 blood patches of leaking lumbar pucture, MRI and MRA of the head and neck still had no idea why blurred vision. After admit went to optomologist, neuro, and had EEG to check for optic nervitis no one can find any reason for blurred vision which has never gone away just gets worse sometimes. Then 2 weeks ago was diagnosed with colitis took cipro and flagyl for 2 weeks. At that time primary doc tested me for celiac disease and pernicious anemia both negative not only that B-12 was high?? Now I am back to square one. I will list my symptoms in the hope that someone can tell me where to go from here. Also if anyone lives in the Dallas area and has a good rheumo doc and can give me their name I would greatly appreciate it.

Symptoms:
weakness
fatigue
chronic pain
joint pain
fever 99.5-101
confusion
numbness
muscle pain and weakness
tingling in hands, feet, top of head, and right side of back near shoulder blade
blurred vision
headaches
back pain
dry eyes, skin, and mouth
weight loss
dizzy
trouble sleeping
depression(treated)
achy
abdominal pain
indigestion
increased light sensitivity
sudden intolerance to salt

FYI I do not have fibromyalsia,
Kasey (kncb95)
Dx: Mixed connective tissue disease '06, sjogren's '06,  GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97
Adderal and lots and lots of vitamins
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/28/2008 1:32 PM (GMT -7)   
I would suggest a new rheumy immediately. Also see a neuro to be tested for MS as I know someone with MS and your symptoms overlap with hers as well. I also suggest you see about a local lupus support group and ask there about a good rheumy. I have to say different labs can end up with different results on the ANA. Plus ANA is not the end all be all. Have they checked for other antibodies? I ask because other antibodies could lead to them finding a dx and treating you much sooner. Sounds like you need treatment ASAP. Ask you primary care if he/she would be willing to give you a short course of steroids, preferably longer than a dose pack. It might help your vision significantly. FYI an MRI of the spine and brain might be a good test to have run as well as tests on your nerves and muscles elsewhere in your body (EMG, etc...). You might feel like a lab rat for a while but eventually they will get to the bottom of it.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 1/28/2008 2:13 PM (GMT -7)   
Thanks for your advise and the answer to your question is yes I was positive for sjogren's and MCTD antibodies but of course all that was done with my first Rheumo doc in '06 I am not sure what my current doc has ordered for sure. The MS suggestion I asked my neuro and my Rheumo if this could be a possibility and my Rheumo ignored me or danced around the subject and Neuro said that was not possible because my MRI of head w/ and w/out contrast showed no lesions and get this when the ER did my lumbar puncture they never ran an MS panel. My last lumbar puncture put me in the hospital for 4 days because they could not get it to stop leaking until after the 2 blood patch so I am afraid to have another because having a lumbar headache is pain like I have never felt before. But I do agree they need to look a little further into the MS possibility.

Also congrats on your baby!!

<FONT color=purple>Dx: Mixed connective tissue disease '06, sjogren's '06, GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97




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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/28/2008 2:56 PM (GMT -7)   
MRI of the brain is not the only place to look for lesions. The spine can get them too. A follow up MRI after 6 months-1yr is always a good idea to see if new lesions show up. This is from my friend with MS, she was ill several years before they caught it.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/28/2008 3:14 PM (GMT -7)   
I agree about getting another opinion from another rheumy. Does the rheumy you are seeing now have your records from your old rheumy that showed the positive ANA and positive antibodies for MCTD? I don't know how he could ignore your old labs - I would be very frustrated if I were you.

I also agree about continuing to follow up about possible MS symptoms. You have too much going on to be brushed off by docs. We all know that labs can vary a lot, going back and forth from positive to negative.

Please don't give up and please keep looking until you find a doc who will listen. Are you on any meds for MCTD or Sjogrens?

Hang in there and keep us posted on how you are doing
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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vanae
Regular Member


Date Joined Apr 2006
Total Posts : 46
   Posted 1/28/2008 5:51 PM (GMT -7)   
Hi & welcome to the forum. I just want to say that my rheumatologist is from the Dallas area. His office is by Presbyterian in Dallas. His name is Scott J. Zashin. You can do a search on his name & they have a web site that will come up. I have only good things to say about him & his staff. He will treat you based on your symptoms not just labs. He does look at the whole picture.

kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 1/28/2008 7:09 PM (GMT -7)   
Hippimom, My current rheumy has seen all labs done by my old rheumy anyone with common sense would look at my previous labs but this Rheumy seems to act put out everytime I am in there. You would think someone who spent extra time in school to learn a specialty would actually have some compassion for the patients she is treating maybe I am just a little to optimistic.
I did try plaquenil but it made me so sleepy and nausea. I took predisone 5 mg with my last rheumy but this one will not give me anything. I have asked for something to help with the pain and inflammation but she only gives me mobic which makes me so sleepy I can only take it when I am desperate. I am a difficult case because everything I am given makes me sleepy(When I say sleepy I mean I wake up feeling falling down drunk) it is so ridiculous. Which could be why she does not like me because I am not a simple case of give her this drug and that drug I make her really think about what she gives me.

Vanae, Thanks for the doctor name unfortunately he is not on my insurance and I have no out of network benefits I checked right after I read your post but thanks anyway. But since you are in this area have you or anyone you know seen Dr. Nair that is who I may have narrowed it down to.

<FONT color=purple>Dx: Mixed connective tissue disease '06, sjogren's '06, GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97




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