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kitkat3
Regular Member


Date Joined Jul 2006
Total Posts : 29
   Posted 7/10/2008 10:22 AM (GMT -7)   
I am going to try to make this short as possible and not so long. Quick history...Female 31 yrs old been wrongly diagnosed for Crohns for 10 years but just found out I actually do not have crohn's. No IBD at all. I have never had a flare only 10 years ago when I was diagnosed. I have been recently diagnosed with Fibromyalgia although I know I have had it for years. My Rheumatologist is not sure what I have although blood work shows autoimmune disease ANA was positive speckled. My Creatine (CPK)levels have been high for 4 months, low blood count. I am being treated with Plequenil and muscle relaxers for the fibro. I hurt all the time. I have chronic bursitis in my hips, also osteoporosis due to a parathryoid tumor that I had removed, chronic sacroillits, carpal tunnel, perpherial neuropathy, hypothyroid, gerd, IBS, and anxiety. I have had the anti-ssa, anit-ssb, the whole work up but nothing really high. My CH50 was a 63? C3-162 and C4-33. I just gotten over a rash on my face due to tanning but it wasn't the "typical" Butterfly rash as I was told. The ultraviolet lights give me a rash on my fash and chest. I do not spend time in the sun because half the time I am trying to just cope with my pain. My ANA is not very high and right now it is an 80 but 2 months ago it was an 180. 6 Months ago it came back negative. I am so confused as to what I have. I always end up in Physical Therapy every few months due to back and hip problems. One week I have Plantar fascitis, the next week it is Costochondritis, tennis elbow, wrist tendinitis etc.... The point is there is always something that is hurting! I am now scheduled for an echocardiogram (heart ultrasound) due to chest pain and shortness of breath. I already had a Pulmonary function test and and that is negative for asthma or any other lung disease. If I am active one day I pay for it for 2-3 days after with extreme pain. I have not been able to work in 5 years (and due to my husband being deployed) I have 3 children and am worried if someone does not find out what is wrong soon I am going to go crazy. I am so tired of hearing "you are tooo young and you look healthy"  Had my doctors listened to me years ago about my complaints they would have found the parathyroid tumor that I have had for 8-10 years according to the surgeon and pathology reports. I don't want to be pushy but I do not want to sit and wait like I have for the past 10 years and hope that I get better. I knew I did not have Crohn's disease after about 2 years. I am always constipated and I stopped my medication years ago but not one doctor would listen to me. Finally after insisiting they do more test they tell me "OOPS you don't have crohn's. I just got a Rheumatologist within the last 6 months so he really seems to be listening but I am worried about Lupus. He keeps bringing it up but they still don't know. I get mouth ulcers and thrush too. I am just told I have an autoimmune disease....but I would like to know which one.
 
Does anyone have ANY suggestions?????????? I am open to ANYTHING at this point.
 
 
Thanks for reading my long post...sorry!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/10/2008 11:51 AM (GMT -7)   
Lupus can be difficult to diagnose for some patients.  It is also possible that you have UCTD (undifferentiated connective tissue disease).  Kind of a catch all phrase for "you have one or more AI diseases but we don't know which one(s).
 
How elevated is your cpk?  Do you have muscle weakness?  Problems getting up from chairs, climbing stairs, raising your hands over your head?
 
I have MCTD (mixed connective tissue disease) which is lupus, scleroderma and polymyositis.  There are so many possible symptoms and diagnosing these connective tissue diseases with all their variants can be challenging.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


kitkat3
Regular Member


Date Joined Jul 2006
Total Posts : 29
   Posted 7/10/2008 12:01 PM (GMT -7)   

I don't know the exact number of my CPK only that it has been coming back abnormally high. I forgot to mention that I also have a high CRP level (14.43). I do have a hard time climbing stairs due to the fact I am so out of breath and my hip bursitis doesn't help much. Some days I do have a hard time getting up from a chair or couch depending on my activity level that day. It's funny you mentioned about raising your hands over your head......I JUST noticed this morning that any activity that I have to raise my arms up over my head causes severe shortness of breath and tiredness. It is getting difficult to wash my hair or use my blowdryer.

 

Thanks for your input I didn't know about UCTD. I will definetly ask my Rheumatologist about that.

 

Kitkat3

 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/10/2008 2:44 PM (GMT -7)   
Polymyositis and dermatomyositis have a distinct pattern of muscle weakness which is why I asked about those functional tasks.  They both hit proximal muscles around the hip and shoulder girdles and those are characteristic patterns of weakness.  That does not mean you have either of them as there are other diseases that can produce muscle weakness.
 
Normal cpk (measure of skeletal muscle breakdown) is about 45-225.  People with myositis diseases can have a slightly elevated cpk up to a 1000 or more.  For severe cases like mine it went to 13000 and can go even higher. 
 
Here is an article that might help you understand UCTD and MCTD.  MCTD is a defined disease but uctd is a sorta, kinda, almost one.  I think it is a catchall when patients have some symptoms of a connective tissue disease but the docs can't give a diagnosis for sure.  My understanding that those with uctd often morph the disease is something more defined over time.
 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/10/2008 4:24 PM (GMT -7)   
Hi Kitkat,

I want to welcome you to the forum . . . but I won't be much help. Bill has given you some good advice (personal experience).

There are some links at the end of my signature that may be helpful to you though.

Rheumies sometimes treat the symptoms and aren't really quick to give a dx. That is actually a really good thing. Some of them actively protect your medical records so you don't run into insurance problems should you need to switch insurance after a gap in insurance.

The plaquenel really is first guns but it does take several months to fully build in your system, so you may not appreciate the benefit for a long time. There are some really good tips for new members in "Lupus Resources" . . . link in my signature. If you scroll down or up to that post.

I'm glad you like your rheumy . . . make sure to list ALL your symptoms at each visit. Type them out and turn them in. Don't assume that he remembers from last visit . . . he may assume that symptom is gone if you don't repeat it each time.

Welcome to the forum!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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