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twinkiet
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/16/2009 11:35 AM (GMT -7)   
Hi All,
 
Needed to vent for a moment. I found out about one month ago that I could have this MCTD. I was diagnosed with Rheumatoid athritis about 20 years ago and I am 31 now. I have had 5 miscarriages and 1 stillbirth. After years of testing with positive and negative RH factor and ANA results, a rheumatologist says there is evidence of a MCTD. On top of that, since October when I lost my baby I have been having all kinds of freakin symptoms and episodes that I seem to be getting no understanding from my doctor. My symptoms have been hair thinning, oral ulcers that lasted about 3 weeks in January, extra aching in my elbows and arm bones the week of my period, hand, finger, ankle and calf swelling and pain, knots and tightness in my calf that lasts for days at a time, my hands turn red and then have spots on them and finally I'm just pissed off! I was away on a business trip and my hands swelled up and my ankles and knees gave out on me. A doctor at the retreat prescibed a predisone treatment. After I finished the predisone I returned to my rheumatologist who sent me for tests and he said there was nothing remarkable about my results but my inflamatory marker was very high whatever that means. Since then I have had a cold for 3 weeks that I cannot get rid of and pain in my body eveyday. I feel like the doctor is not being as helpful as he could be. He tells me I probably have this MCTD, but gives me no further information meanwhile I am having all of these symptoms and I feel like he is not taking me seriously. My primary care and the rheumatologists keep sending me back and forth to each other. HELP!

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/16/2009 2:39 PM (GMT -7)   
Hi Twin, welcome to the forum. I am sorry to hear you are having so many problems (((hugs))). This is a great place filled with wonderful people that will offer their advise and support!!! I think you will like it here!

A lot of your symptoms sound like lupus, do you know what tests they have ran to try to figure out what's going on with you? Lupus and other autoimmune diseases' are often triggered by pregnancy, childbirth, stress, etc. Have they ever checked you for APS (Antiphospholipid syndrome)? It is known as sticky blood and can cause miscarriages among other things. I have had 2 miscarriages myself and I have lupus not APS so it can happen with either disease. There are members here with APS, I am sure they will be along shortly to give you more information.

""""""inflamatory marker was very high whatever that means""""""" this means you have inflammation in your body, most likely in your joints since they are painful. Do your doctor's have you on a treatment plan?

MCTD is a real condition but your doctor's need to be more open with you and explain these things to you, it doesn't sound like they are listening or doing their job. If they keep sending you back and forth I think I would find a new primary and rheumy!!!

Sometimes a dx is not that important but the right treatment plan is!! I hope you can find a doctor that will listen to you and help you feel better!!!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Post Edited (jhmom) : 3/16/2009 4:37:26 PM (GMT-6)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 3/16/2009 3:19 PM (GMT -7)   
MCTD is an overlapping connective tissue disease and by definition includes lupus, scleroderma and polymyositis.  Each case is unique you can present symptoms of any or all of these diseases.  There is a specific antibody (anti RNP) that defines MCTD but that does not always show up in lab tests in the beginning.  Just like lupus alone diagnosis and treatment can be very difficult.  It is important to have a rheumy experienced with auto immune and not just arthritic diseases.
 
The inflammatory marker your doctor referred is probably the SED or ESR rate.  It does not diagnose a specific disease but indicates that some inflammatory process is active in your body.
 
Your short term prednisone treatment will do little other than relieve the symptoms for a while.  It usually takes a long term treatment of prednisone, some type of immuno suppressant or even other treatments to tame your immune system.  This is not like having the flu.  Some cases can be very mild, some chronic and some, like mine, very extreme.
 
It seems to me that you need to find a more experienced doctor or clinic that treats AI diseases and get a second opinion and better explanation.
 
 
 
 
Hope you can find some answers.  It is bad enough to be sick but frightening when you don't have a diagnosis.
 
Bill
 
 

twinkiet
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/16/2009 3:46 PM (GMT -7)   
I have had a full workup as far as I know. I tested negative for APS. For months the lupus test was inconclusive and then I had another test 2 weeks after I gave birth and my numbers where 1:320 which I know signals something is wrong. I have a had a postive ANA and RNP. There has been no treatment plan but the doctor told me to "note" episodes. He gave me a presciption for MOBIC? and told me to take that once a day as needed. There has been no further plan, meanwhile I feel as each day goes by they are missing something..... I go to the rheumatologist and he says "how do you know it is not something viral?' My answer, who's the doctor? how do you know it is not something viral? My PCP says it could be something viral, but you should definitely follow up with rheumatologist..... I have done some research on MCTD, but call me stupid, I don't know what to expect..

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/16/2009 4:29 PM (GMT -7)   
(((Twin))) I know how frustrating this is, hang in there! Knowledge is power, Bill gave you some great links, read everything you can and questions and if your doctor's don't listen, then fire them!! Also take a look at the link at the bottom, it's a criteria list that doctor's use, if you have 4 of the 11 they usually consider lupus.

The following symptoms can point towards lupus (among other things, but I have personally experienced them) - hair thinning, oral ulcers that last for weeks, joint pain in hand, fingers, ankle and knees and hands turn red and then have spots on them (this sounds like Raynaud's) among other symptoms.

www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=75&zoneid=19

Feel free to ask more questions
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


twinkiet
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/16/2009 4:44 PM (GMT -7)   
I developed a rash on my face but not the butterfly rash the week I lost my son, I was 28 weeks. The rash went away about 2 weeks after but then other things started happening.I have had the oral ulcers, the photosensitivity, and the arthritis in addition to the positive ANA and RNP.

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/17/2009 9:49 AM (GMT -7)   
I just wanted to say my heart breaks for you. You have suffered tremendously. I really hope you get some answers and help. I would consider finding another rheumatologist. God bless you, judy

MsKay
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/24/2009 8:32 AM (GMT -7)   
Hi Twink, I think we joined the forum about the same time. Luckily for me my PCP did some blood work on me just because I am fatigued and achy all the time. Nothing compared to what some others on here have gone through. I was lucky that my PCP sent me to a good rheumy right away. My ANA was also 1:320, The Rheumy did more blood work and my ANA Anti-Ro SSA (pointing to Sjogren's Syndrome) and my Anti-RNP (MCTD) were both positive. SED Rate was also high. The rheumy sent me for a 2d echo of my heart this morning ( to rule out pulmonary hypertension). I go this afternoon to the Opthomologist to rule out or diagnose the Sjogrens. I also hate that we don't know what is wrong or exactly what we have..... but a major key is tests...tests...and more tests. They can definitely rule out some things. If they are not doing this for you find new Drs. Remember....they work for you and if they are not, find ones that will. If the Sjogren's comes back positive my drs are considering putting me on plaquenil therapy. Still learning about it but I guess it will keep some MCTD's at bay. Keep posting so I know how you are doing. My heart aches for you. You are in my prayers and I hope you find good treatment.

Also If Bill reads this does it sound as if my Drs are on the right track with me. I appreciate your knowledge and the responses you give to all of us. Thanks!

twinkiet
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/24/2009 9:00 AM (GMT -7)   
I'm set to go back to Rheumy tomorrow for guess what, more tests! I need to get a neck x-ray, see the vascular specialist to make sure the knot in my leg is not a blood clot ( it's been there two weeks now) and to get a chest x-ray. I'm getting really frustrustrated....

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 3/24/2009 9:04 AM (GMT -7)   

Mskay,

Your doctors seem to be doing the right things to diagnose your problems.  So many suffer with inexperienced docs and are not diagnosed or treated for years.  Early diagnosis and aggressive treatment are important for a good prognosis.

Treatment for MCTD is typically prednisone at first and then some pred sparing med like imuran or methotrexate.  I don't know how mctd is treated when someone has sjogrens.  My docs first started the quest in Sep 2004 and it was Oct 2005 before they got a positive diagnosis of mctd.  Along they way they guessed I had lupus before the first symptoms. My labs showed very low platelets and mild anemia and the hematologist deduced I had lupus after eliminating other possible causes.  2 months later the first symptoms appeared and lupus was diagnosed shortly after....then mctd 2 months later. 

It was also suspected I had pulmonary hypertension but a right heart catherization showed I did not.  My breathing problems were due to weakened muscles and was imitating PH.  Your doctors seem to be on top of things if they are testing for that...most docs would not know to do that.

Bill


MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


MsKay
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/24/2009 2:55 PM (GMT -7)   
Thanks Bill, I had a two hour exam at the opthomologist today.......My eyes are still dilated. He was very thorough. The shirmer test did show less tear production than what is normal. ( But he won't confirm Sjogren's...He said he will leave that up to the Rheumy when he sends him the report.) Before the Rheumy puts me on the plaqeunil he wants me to come back in 4 weeks for another exam because the field test was so different for my left eye than it was on the right eye. He just wants a good base to go on before I am put on any medications for this. I told him my vision in my left eye has always been worse than the right. I guess I'm getting lucky finding good Drs. Thanks again for your reply....Take Care!

Hi Twink, Hope all goes well for you...You're in my prayers.

I forgot to add in earlier posts that my PCP also sent me for a Brain MRI, Upper and Lower EMG back in Feb. Both came back normal. The MRI was to rule out MS. Had Bone Density test also. I already knew I had Ossteoparosis but was able to get the Reclast infusion March 13th, so no more pills for that, just calcium and Vitamin D. Reclast lasts for a whole year!
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