Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: Please help!

  1. #11
    Join Date
    Apr 2008
    Location
    Klamath Falls Oregon
    Posts
    291
    Thanks
    0
    Thanked 10 Times in 7 Posts

    Default

    Please hang in there. Do keep your rheumy appointment and I pray that he is a good one and is willing to listen to you and work with you, that will make all the difference in the world. Keep us up to date on how things are going. God bless, Jim.
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

  2. #12
    Join Date
    Jun 2008
    Posts
    915
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Puzzled,
    My name is Kathy. I have SLE Lupus and Sjogrens Syndrome and Pernicious Anemia and Celiacs Spru. I read over your post and see that you have the Speckle pattern ANA. Have you asked your doctor to seriously look into you having Sjogrens Syndrome and or Scleroderma? It sounds more like Sjogrens though with the pain in the shoulders and muscles. I have to wonder if you have a problem with dry mouth and dry eyes. Do you have problems swallowing? You know that Sjogrens can also adveresly affect your lungs in a big way. You don't mention if you have ever had a malar rash that is pretty common with Lupus. Also with Sjogrens you can often times be sun sensitive. Have they tried you on Plaquenil? They use this drug to treat Sjogrens as well as Lupus. I hope that you get some answers. I will be praying that this Rheumatologist that you are going to see is a good one and not an idiot.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #13
    Join Date
    Nov 2009
    Posts
    24
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Kathy Thanks for giving me more information about Sjogrens. I knew a little about the condition but i was not familiar with the fact that Sjogrens can cause fatigue, muscle/joint pain and lung issues. I couldn't believe when i read it can also cause sun sensitivity! I have not noticed dry eyes or mouth though. My Doctor was pretty certain that i am not experiencing symptoms of scleroderma but he never mentioned Sjogrens. He did mention maybe i had mctd (yet i thought mctd included scleroderma) To my knowledge i have not had the malar rash.

    I will certainly question what my doctors impressions are on what is going on. I will be wanting very good explanations if they exclude anything. I can see why getting a diagnosis takes so long. I only hope this doesn't delay treatment for me. Thank you for the information.

  4. #14
    Join Date
    Nov 2009
    Posts
    24
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Finally have a diagnosis - UCTD. I have commenced plaquenil. I feel like i have been running a marathon all these years and finally someone has tapped me on the shoulder to tell me i have crossed the finish line. Only time will tell if it ever becomes a defined connective tissue disease. It would be great if it doesn't. Even better if it would go away one day. The main thing is i have a treatment plan with prednisolone added for short term relief. My Rheumatologist is absolutely amazing! I can't believe how fortunate i am to have such a great Rheum.

  5. #15
    Join Date
    Jan 2009
    Posts
    178
    Blog Entries
    1
    Thanks
    0
    Thanked 11 Times in 7 Posts

    Default

    sounds like you need a new rheumatologist. I need a psych when I'm in pain, but I'm not in pain because of psychiatric conditions.
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

  6. #16
    Join Date
    Oct 2008
    Location
    California
    Posts
    1,213
    Thanks
    280
    Thanked 208 Times in 162 Posts

    Default

    Quote Originally Posted by justomegirlindallas View Post
    sounds like you need a new rheumatologist. I need a psych when I'm in pain, but I'm not in pain because of psychiatric conditions.
    Very well said, justomegirlindallas!

  7. #17
    Join Date
    Nov 2009
    Posts
    24
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    OOPS maybe i should have explained myself better. UCTD is a diagnosis of Undifferentiated Connective Tissue Disease. It is a diagnosis that is given when a patient doesn't fit the full criteria for a defined connective tissue disease, but has evidence of an evolving disorder.

    She definitely believes that i do not have a psychiatric disorder that is causing the symptoms, she said there is no evidence to her that i even had depression and that even if i was depressed she felt it would be my symptoms causing depression and not the other way around.

    Studies estimate that UCTD has a 40% chance of staying undifferentiated, 20% chance of full remission, and a 40% chance of becoming a defined connective tissue disorder such as Lupus, Sjogren's and myositis etc.

    My Rheum really was fantastic and she felt that once the plaquenil and prenisolone started to work that i would feel alot better.

  8. #18
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    I also have Mixed Connective Tissue Disease - Lupus, RA, Psoriasis and Sogren's, along with Meniere's syndrome and Spasmodic Dysphonia. I went through a long, frustrating time of uncertainty, too, until I found a good rheumy who began to treat me for it. I'm taking plaquenil and MTX and they are working fairly well for me.
    Marla

  9. #19
    Join Date
    Nov 2009
    Posts
    24
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks for responding Marla. I'm glad you find plaquenil and MTX is working. I really hope plaquenil works for me. In the meantime Pred is helping. I'm hoping i won't need any other types of drugs. I want to avoid MTX. I'm happy with how things are going so far. I hope it keeps getting better.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •