CONNECTIVE TISSUE DISORDER...NOT LUPUS?

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wolftrades
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Date Joined Aug 2005
Total Posts : 301
   Posted 12/20/2007 9:06 AM (GMT -7)   
I was rx'ed with Anemia of Chronic Disease about 2 weeks ago. I have had chills enough to wear 3 shirts and 2 jackets at a time in South Florida, itching, fatigue, a strange deep ache (most likely malaise). My blood test, besides showing anemia, had elevated sed rate (Twice the guidleine #) and elevated C-RP (again, twice the guidline #). I also have psoriatic arthritis.
 
I went to the hemotologist who said I have a "ton of arthritis". I already knew that because I suffer from some major back problems and arthritis is one of the problems. But 2 Friday's ago, after a very tough day for me, I had the classic Lupus mask with the red blotches under the eyes and on the nose bridge.
The hemotologist told me to come in yesterday instead of January. He did not take more blood but said that under a microscope, my red cells were not shaped normally, but he felt that was due to the arthritis.
 
He felt that I did not have Lupus, but perhaps another auto-immune and said I have a connective tissue disorder.
Now, my ANA WAS negative, but there are subsets of Lupus that have negative ANA.
He now wants me to have a CT scan of chest and abdomen.
 
My question is about the misshaped red cells. He quickly blew it off as from the arthritis. Does that sound right? He also felt that I do not have a blood disorder and did not want to do a bone marrow biopsy.
Alan

Post Edited (wolftrades) : 12/20/2007 9:24:24 AM (GMT-7)


Ginny
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   Posted 12/20/2007 9:37 AM (GMT -7)   
Hey Alan,
 
I have a friend with psoriatic arthritis.  He gets the lupus rash on his face too.  All the symptoms of lupus, but has been told lupus isn't there.  I think psoriatic arthritis mimicks lupus a lot.  All the same blood test results, skin involvement, arthritis.  Very similar.  Anemia is very, very common with lupus.  I wonder if the psoriatic arthritis is just really prevalent with you right now.  ARe you in a flare up?  With a sed rate twice the normal limit, I'd suspect it.
 
I hope you get some answers concerning the anemia.  I'd get a second opinion if you're feeling weird about this doctor. 
 
Keep us posted,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
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   Posted 12/20/2007 2:36 PM (GMT -7)   
Hi Alan,

Well . . . you and I fall in a similar category. No blood work to confirm Lupus, but many of symptoms. I have had some docs say that I have Lupus and some that say not. The two rheumies say no . . . the two derms said yes. Bottom line (for me) is that the doctor IS treating my connective tissue disease. I'm actually relieved to keep the word Lupus out of my medical files.

Sorry you are feeling so frustrated. Do you think this doctor is treating your issues well???

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


wolftrades
Regular Member


Date Joined Aug 2005
Total Posts : 301
   Posted 12/21/2007 1:07 AM (GMT -7)   
Rosie, it is hard to say. I feel he shot down lupus too quickly and he doesn't want to do a bone marrow biopsy yet. He wants me to do a chest and abdomen ct scan on Monday.

Right now, fatigue, chills and this malaise feeling are what is kicking my butt. I also have some major issues with my back with levels of bulding discs, 2 levels of spinal stenosis and facet hypertrophy. I currently wear a 100 mcg Fentanyl Patch for which I recently got authorization to change every 48 hours, and I take up to 4 30 mg Roxicodone a day for b/t pain.

The combination of my back issues and this auto immune problem is really stealing my energy! Do you ever get this feeling of malaise where you get this feeling of achyness and pain deep within you?

What Lupus type symptoms do you have?

Feel Better!
Alan

hippimom2
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   Posted 12/21/2007 7:24 AM (GMT -7)   
Alan, it can be so frustrating to be in that limbo land of diagnosis. All of these illnesses are so closely related and share so many symptoms that it can be really hard to get a concrete diagnosis. Like Rosie said, the most important thing is that your symptoms are being treated. On paper, my rheumy has written undifferentiated connective tissue disease, but in person he tells me I have lupus (he has UCTD on my charet because it's better for insurance purposes). A lot of these illnesses are treated with similar meds.

I hope your doc can get to the bottom of what's going on soon. Like Rosie said, you can also get another opinion if you aren't comfortable with this doc.

That feeling of malaise and deep pain you described is something I get when I am feeling really sick.

Hang in there and take care.
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; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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AlwaysRosie
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   Posted 12/21/2007 5:36 PM (GMT -7)   
Alan . . . do you hurt in your bones???

I have felt bone pain only a couple of times and it really scared me. But it left quickly so I never pursued it.

I do get very achy and this will migrate over the years from upper body to lower. I've also got spine issues which, I believe are unrelated to whatever chronic illness I have. This causes about 30% of my issues.

I am already 55 years old so some of my issues are now blurring into what others might feel is "old age" even though they started at about 20 years old.

There is a link at the end of my signature if you want to look at the 11 criteria for diagnosing lupus. You need 4 of the 11 (to be documented by the doctor) to confirm lupus. If you get rashes or mouth sores, take pictures so you can show your rheumatologist. If you aren't seeing a rheumatologist, you might want to get a referal to one. They are the real lupus detectives.

There is also a link at the end of my sig for "lupus resources". Within that topic, there is a post which lists suggestions from lots of the members here. Well worth the read.

Keep us posted!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Bsime
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Date Joined Apr 2006
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   Posted 12/22/2007 1:13 PM (GMT -7)   
Alan,
 
It sounds like you have some type of connective tissue disorder.  I have MCTD (lupus, scleroderma and polymyositis) and had many, many tests before diagnosis.  Bone marrow biopsy was one of them to eliminate cancer or a bone disease.  My early symptoms were mild anemia and low platelets.  Later on an elevated sed rate and other test indicators but it was obvious by then that I had lupus at the very least.
 
Diagnosis of any of these is based on many thing...symptoms, tests and no 2 cases are alike in symptoms or response to treatment.
 
Keep a list of all symptoms even if they do not seem related.  If you are seeing more than one doctor make sure each of them sees all the test results so they are not working at cross purposes. 
 
Not sure about your question on red blood cells but I have seen information on that...just don't remember what it was.  Do a google search and go on both the LFA (Lupus Foundation) site and the TMA (Myositis Assoc) site for information.
 
Hope you can get some answers soon.  It can be frustrating but these are complicated and highly individual diseases so it is not easy even for a good doctor.
 
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
 
 


wolftrades
Regular Member


Date Joined Aug 2005
Total Posts : 301
   Posted 12/23/2007 12:26 AM (GMT -7)   
Thanks for all of your comments. Yes, all of these things like Lupus and Psoriatic Arthritis and Connective Tissue Disorder and Anemia of Chronic Disease are have similar symptoms. Problem is, I'm really not getting treated for this at all. I'm on pain meds for my back pain, which is severe enough without having to add all of this to the mix.

Monday I go for a CT scan of my chest and abdoman and I'm supposed to see him 3 days later.

I am still curious about his comment about my misshapened red cells. The hemotologist says it is due to the arhtritis. I'm just concerned because I thought if you see something like that under a microscope, it is more indicative of cancer.

Alan

redrose77
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Date Joined Sep 2005
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   Posted 12/23/2007 4:32 AM (GMT -7)   
Alan, I have to ask if you are on Humira/Enbrel/any TNF blocking medication. I have serious back issues and no one is exactly sure what they are caused by. What we do know is I have psoriasis, rheumetoid arthritis, and lupus (as well as many other conditions). I am ANA negative but have more than enough criteria. See a rheumetologist ASAP psoriatic arthritis can destroy your spine and other joints just as bad as rheumetoid can and sometimes a lot faster. You need the PA controlled ASAP and it does not sound like it is being adequately treated. A rhemetologist could treat it and would give you much better meds. My RA is controlled by my meds and the spinal issues are significantly helped by the Enbrel injection I take every single week. I would see a second hemetologist for another opinion about your red blood cells. Some diseases attack red blood cells that have nothing to do with cancer. It sounds like you may have a second autoimmune condition- please be aware psoriasis and psoriatic arthritis are autoimmune conditions. Having one makes you more likely to have another AI disease. I have no clue what the increased risk it but if you look at people's signatures here you will find many of us have multiple diseases. I think your being a man may make the hemetologist dismiss lupus and similar conditions more quickly simply because it is more common in women. Yet, I have male friends with lupus so it isn't impossible. Be aware the ANA can fluctuate by day which means it isn't always accurate and many rheumetologists are beginning to dismiss it as a test because of how unreliable it is. There are better ways to judge lupus than the ANA. I was dismissed for over a decade because of my negative ANA- I had 2 family members die of kidney failure from untreated lupus for the same reason. Another family member died because she got a clot after a surgery and they said it was likely because her lupus was not controlled. Today they would have checked her for anti-phospholipid antibodies and the lupus anti-coglutent which she may have had.

Never take a doctor blowing off something that feels important to you. Remember they work for you and you have the right to fire them if they don't pay attention or dismiss symptoms. Make calls now for second and third opinions and find a rheumetologist. You need one even if you don't have lupus. I wish you luck.
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


wolftrades
Regular Member


Date Joined Aug 2005
Total Posts : 301
   Posted 12/23/2007 4:59 PM (GMT -7)   
Actually, I am not on any meds for my PA. The only meds I take are pain meds for my back. My back problem is 3 levels of Bulging Discs. The Discs are dry and the liquid inside has leaked out. There is also 2 levels of spinal stenosis and 2 levels of facet hypertrophy whic is an extremely painful arthitic condition in the spine. I wear a 100 mcg Fentanyl Patch and take up to four 30 mg Roxicodone a day for breakthrough pain.

I am getting no treatment at current for the psoriatic arthritis or the anemia of chronic disease. I guess the idea is to try to get a better undertstanding of what it is I do have before treating it.

How much weight loss should make me worry? I have dropped from about 215 to 205 in the last 2-3 weeks without trying. I hasve noticed a litle drop in appetite.

As I said, the malaise is the worse feeling along with the fatigue.

I have a CT scan set for tomorrow because last week, at the peak of feling bad, I did feel it was a little hard to breathe.

FEEL GOOD EVERYONE!
Alan

redrose77
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Date Joined Sep 2005
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   Posted 12/23/2007 5:37 PM (GMT -7)   
I hate to say this but waiting to treat could cause you to have even more damage to your spine and joints. I have no clue on weight loss. I would worry more about why no one is treating your other problems because treatment might be the best way to sort out what is exactly wrong. As symptoms come under control which problem is caused by what and which symptoms don't clear up will let them know what may be wrong. It will also allow them to further investigate what is left and rule things out. I know this sounds strange but treating the symptoms could save your life.
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


AlwaysRosie
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Date Joined Jan 2005
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   Posted 12/23/2007 8:38 PM (GMT -7)   
Hi Alan . . . my doctors wanted me to wait for treatment too . . . so they could complete certain testing w/o meds in my body. This was while my primary care doc waited for initial blood work and then sent me to the derm, who waited for his bloodwork and biopsies who sent me to a teaching derm who waited for her additional tests and biopsy. Once I reached the rheumatologist he got me started quickly with meds.

Are you seeing a rheumatologist??? If not, that's where you belong. See if you can get a referral.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Audrey Ann
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Date Joined Jul 2005
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   Posted 12/23/2007 9:21 PM (GMT -7)   
Greetings Alan! Rosie and Redrose and Bill give excellent advice. I agree that you need to see a rhuemy very, very soon. We do not always sound so bossy on this site, please know that. We just know from experience that it is harder to get things under control if you wait too long. Then, in the meantime, this disease has the potential to do serious damage to your joints or to other organs.

Prayers to you!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


wolftrades
Regular Member


Date Joined Aug 2005
Total Posts : 301
   Posted 12/25/2007 11:44 PM (GMT -7)   
I am feeling like crap...tired, in extreme pain in lower AND upper back and legs and hips despite pain meds...everything seems like a chore...don't want to move.


Alan

AlwaysRosie
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   Posted 12/26/2007 1:57 AM (GMT -7)   
Sorry you are feeling so pooryly Alan.

Most Lupus related pain is inflammation driven. So, anti-inflammatories are our best friend. A lot of us depend heavily on OTC meds like Ibuprofen. The big guns rx med is prednison, which does a great job with the inflammation, but has side effects when taken in large doses or when taken long term. If your pain is back related (like pinched nerves) you might need to seek help from a spine doctor who can help you do something to free the trapped nerves. Ultimately, it is necessary to determine the source of the pain to properly treat it.

Meanwhile . . . until you get some help from your doc, many of us have had some significant relief from things as simple as using an electric blanket at night. When we improve the quality of our sleep we find that a good part of our symptoms are better managed during the day . . . or at least somewhat improved. So do anything you can to sleep well and to gain restorative sleep.

Keep us posted.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


wolftrades
Regular Member


Date Joined Aug 2005
Total Posts : 301
   Posted 12/26/2007 12:02 PM (GMT -7)   
Well, the thing is, I do take very strong pain meds for my back...of course, that really doesn't treat the inflammation. I really need to see a rheumy, but I am waiting for the results of my chest, abdomen and pelvic CT I took on Monday.



Alan

redrose77
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   Posted 12/26/2007 1:18 PM (GMT -7)   
I hate to say this because it is going to come out sounding wrong but someone needs to. It is time to stop waiting for everything to be perfect before you see a rheumy. If you keep waiting for this test or that record you are going to end up waiting forever and by the time you finally get into a rheumy you will end up in trouble so bad you are close to death or the damage is beyond help and you will wish you were dead. I know that sounded simply awful but darn it all my brain doesn't work the way it did a few years ago when I could say everything perfect. When I first saw my rheumy all I had was the most complete history I could recall- no medical records- and a few pictures of various rashes and such. I also had the physically apparent symptoms. My records had been requested 10 times from everywhere and non had ever been received. Yet based on my history, the pictures, and the visible symptoms that day I walked out with lab and Xray orders, a diagnosis, and a treatment plan. I gave up waiting for all the tests and records because I couldn't take the pain anymore, add to that I felt like I was dying- literally not pain related just felt so horrible and felt my strength and will to fight slipping further and further each day and I am darned lucky I went when I did. As it turns out I can awfully close to dying that fall- nearly 6 months after treatment began and had my rheumy not told me which test to request I would have died from a burst gallbladder. It was a long hard fight to get my lupus under control, my RA managed, and a couple of my other health issues bearable. I will likely always be weaker than I would have been if treated sooner, I will always have to deal with the damage to my spine and joints that happened before treatment was started and while we waited for it to begin working, I will always have neurological issues as a result of the damage done to that system too. I do not want someone else to have to suffer what I have, I do not want to see someone else wait to be treated because they think all the tests and all the background have to be in place before they see a rheumy. Make the appointment for a soon as you can get in. If you were close enough I would recommend my rheumy.

Heck she is treating my husband- he had 2 blood tests and a very sketchy history as well as 1 picture when he first saw her. Initially we thought his problem to be episodic- occurring 3-4 times a year but apparently he had been hiding symptoms and problems because he finally admitted everything during his last visit and she suspects he may have the early stages of RA or another rheumetological condition. No one had run any xrays or special tests beyond a SED and ANA- his ANA was very low positive. She re-ran it and it came back negative. The SED was negative despite the fact his hands were 4 times their normal size, red, hot, and curled like claws yet unable to move more than a few centimeters when it was drawn. She did not re-run the SED. Now he needs to have an RF and a third ANA done as soon as he can get into the lab. He thought he was just getting old and although he occasionally told his PCP about the symptoms no one bothered to look closer. You don't need a huge log of tests or a precise history for a rheumetologist to be able to figure out what is happening. You just need to let them get started.

Please make an appointment now, before the damage is so bad there is nothing to be done about it because that is what psoriatic arthritis does- it completely destroys the joints and can do the same to the spine. Once the damage is done nothing can undo it. Often even a joint replacement is impossible because of the damage to the surrounding bones and tissues. You do not want to wait until it is too late. I would hate to see someone else suffer needlessly I lost family members to lack of treatment and nearly died myself. I have watched a friend lose parts of her fingers from poorly controlled raynauds. I have seen so much suffering and want to try and help others spare themselves the same or worse.
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


mandy w
New Member


Date Joined Dec 2007
Total Posts : 3
   Posted 12/26/2007 7:54 PM (GMT -7)   

Hi there...this is my first post.  I was "unofficially" diagnosed with lupus four years ago.  I have a neg. ANA but have the malar rash, EXTREME photosensetivity, joint inflamation, pleurasy, chronic migraines, night sweats, swolen glands (I actually had a lymph node biopsy b/c they originally thought I might have lymphoma), nasal and mouth ulsers (almost constantly), multiple tendonitis and bursas, irritable bowel syndrome and horrible fatigue.  My rheumy treats me for the symptoms of lupus but my medical record says I have arthroalghias.  To top it off, I was diagnosed with degenerative disk disease last year which wouldn't normally be a major issue but the lupus has inflamed the faced joints in the degenerating disks.  When I get facet injections to help with the pain I have worse pain for a week b/c my lupus adversely reacts to the intrusion of the injection. My latest problem is CONSTANT migraines.  My neuro and I are trying everything under the sun to figure out a solution, but lupus migraines are usually pretty hard to solve...go figure.  When I want to feel sorry for myself, which I really try hard not to do, I start to think this disease is the work of the devil.

I am 31 years old, married and the mother of an eight year old daughter who is the center of my world.  She is suffering horribly because she feels like she needs to take care of me, even thought I work so hard keep her from seeing my pain.  I have a pill box the size of a photo box.  I take prednisone, plaquinel, neurontin, lexapro, topamax, tramadol, nortriptlyline, miralax, and vicodin when needed. 

Thanks for listening...just needed to vent.  My mom had RA and she and I usually vent to each other but sometimes I feel bad using her as a sounding board for my crap b/c I think deep inside she feels guilty b/c her side of the family may have given me the lupus.  She's the best thing in the world and I'd take her pain away from her in a second and she'd do the same for me...and unfortunately neither of us can do a darn thing for the other.


emmi
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Date Joined Apr 2005
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   Posted 12/26/2007 10:39 PM (GMT -7)   
Mandy,

Hi glad you are posting. I also have chronic migraines due to autoimmune diseases. I also take neurontin and topamax. Ask you dr. if he thinks or will let you do a trial by adding verapamil. Once we added this to my "arsenal" the headaches were under control. I wish you the best in diminishing your headaches.

emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


AlwaysRosie
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Date Joined Jan 2005
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   Posted 12/27/2007 12:18 AM (GMT -7)   
Welcome to the forum Mandi!! I copied your post to a new topic (New Member - Lupus Headaches - Please help!) so more members would see it.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


wolftrades
Regular Member


Date Joined Aug 2005
Total Posts : 301
   Posted 1/2/2008 2:11 PM (GMT -7)   

I have anemia of chronic disease, psoriatric arthritis, an elevated sed rate and C-rp. itching, dropped 10 pounds in about 3 weeks, slight loss of appetite.

CT scan revealed mildly enlarged lymph node 1X1 cm on right inguinal region along witha mildly enlarged thymus (2X1 cm) and top normal sized lumph nodes in pretracheal and paraaortic region.

Spleen, at 12.6 cm, is mildly enlarged.

Is a bone marrow biopsy called for next?
What IS next?
Could this be lymphoma?

Thanks
Alan


Bsime
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Date Joined Apr 2006
Total Posts : 1298
   Posted 1/2/2008 5:42 PM (GMT -7)   
Alan,
 
You need to trust your doctors and let them do what tests they think are necessary.  There are many conditions that could be causing your symptoms and it sounds like they will need more tests to determine what is causing your problems.
 
If they think a bone marrow biopsy is necessary then get one.  It is an office visit, not really pleasant but there are much worse things than that.  I had one and they had to do it again.  It did rule out a bone marrow problem and allowed the docs to focus on other causes.  Eventually I was diagnosed with mctd.
 
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
 
 


wolftrades
Regular Member


Date Joined Aug 2005
Total Posts : 301
   Posted 1/16/2008 12:58 AM (GMT -7)   
UPDATE:
CT Scan of chest revealed mildly enlarged spleen, mildly enlarged thymus and a mildly enlarged lynph node in groin. Visit with hemotologist today to go over scan. First of all, he threw out the lymph node because at 1 cm, it was at the top of normal range according to him.
 
He didn't say anything about the thymus and spleen and said I should see him in 3 months.
 
What was interesting was that my red cells were up, but my platelets were down. I've had some bloody nose issues too, this past week.
 
Now correct me if I'm wrong, but doesn't enlarged spleen and low platelets go with lupus?
 
 
 
 
Alan

redrose77
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   Posted 1/16/2008 4:13 AM (GMT -7)   
I am not positive but you really need a different doctor. Go see a rheumy RIGHT AWAY! Then look for a new hematologist and also a dermatologist. You also need to find a really good internist who listens and understands something more is going on.
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


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 1/18/2008 9:46 AM (GMT -7)   
As everyone keeps pointing out all of these conective tissue disorders have so much overlap. I have three of the eleven characteristics for lupus, I test positive for many of the fibro points but not enough for a diagnosis, I have many symptoms of chronic fatigue but not enough for a diagnosis. I have RA. The treatment for many of these disorders is often similar though not the same. One of the keys is going to a Rhuemy and letting him/her order the tests they think are neccessary and start treatment. Exact diagnosis often comes later.
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