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Chachi
03-09-2011, 05:11 PM
Hi all,

I had my first appt. with rheumy yesterday. He was rushed and not very methodical, I sure hope he knows what the heck he is doing. He sent me for some tests: ESR, CRP, AST, ANA, anti ds DNA, ANCA, B12 folate, iron, ferritin, TIBS, CBC, creatinine, ck, alt and urine. Does that sound about right? Fingers crossed that he can figure this out. He mentionned Lupus and connective tissue disease as well as urticarial vasculitis and pernicious anemia.....Once again it's the waiting game now. I'm worried that nothing is going to turn up and meanwhile I'm still feeling horrible and missing tons of work.... I have a new symptom-chest pressure/pain-in the middle -I think it might be my lungs. It feels heavy, and a tiny bit harder to breathe-no stabbing pains. I had it almost all day today-and now it hurts in the back as well. Sound familiar to anyone? It doesn't really sound like pleurisy??My NP sent me for a chest x-ray-haven't heard anything yet
Thanks in advance for any feedback. I'm trying to stay positive.

wendy

Peridot20_Gem
03-09-2011, 05:33 PM
Wendy,
I know i've just been intouch on your other thread mate but chest pressure and pain where the lungs are, i've got that on a regular basis and shortness of breath, i went and saw my doctor as my right lung as a swelling and he said it's when the Lupus is high and running riot in the system which will cause that, the pain can be murder at times so i know how you feel onthat score mate, you've got the same as i've got wendy refering your lungs and breathing plus i'm on a steriod inhaler for night and 2 different ones during the day.
If you would have had pleurisy it would have showed on your x-ray and you'd have been called back by now, i've had that twice bad and it's scared my left lung with a black patch.

Stay positive mate and i'll look up some of the conditions they've mentioned and add them to help you with more info.

Terri xxx

Peridot20_Gem
03-09-2011, 05:45 PM
Wendy info on CONNECTIVE TISSUE DISEASE.


What is a connective tissue disease?

A connective tissue disease is any disease that has the connective tissues of the body as a primary target of pathology. The connective tissues are the structural portions of our body that essentially hold the cells of the body together. These tissues form a framework, or matrix, for the body. The connective tissues are composed of two major structural protein molecules, collagen and elastin. There are many different types of collagen protein that vary in amount in each of the body's tissues. Elastin has the capability of stretching and returning to its original length -- like a spring or rubber band. Elastin is the major component of ligaments (tissues that attach bone to bone) and skin. In patients with connective tissue diseases, it is common for collagen and elastin to become injured by inflammation. Many connective tissue diseases feature abnormal immune system activity with inflammation in tissues as a result of an immune system that is directed against one's own body tissues (autoimmunity).

Diseases in which inflammation or weakness of collagen tends to occur are also referred to as collagen diseases. Collagen vascular disease is a somewhat antiquated term used to describe diseases of the connective tissues that typically include diseases which can be (but are not necessarily) associated with blood-vessel abnormalities.


Connective tissue diseases can have strong or weak inheritance risks

Connective tissue diseases that are strictly due to genetic inheritance include Marfan syndrome (can have tissue abnormalities in the heart, aorta, lungs, eyes, and skeleton) and Ehlers-Danlos syndrome (many types may have loose, fragile skin or loose [hyperextensible] joints depending on type).

Other diseases of connective tissue cannot be regularly defined by gene abnormalities. These connective tissue diseases occur for unknown reasons but may have weaker genetic factors that predispose to their development. They are characterized as a group by the presence of spontaneous overactivity of the immune system which results in the production of extra antibodies into the circulation. The connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis. These are considered classic collagen vascular diseases. Each of these diseases has a "classic" presentation with typical findings that doctors can recognize during an examination. Each also has various typical blood test abnormalities and a variety of abnormal antibodies that are commonly found in blood testing. However, each of these diseases can evolve slowly or rapidly from very subtle abnormalities before demonstrating the classic features which help in the diagnosis.

Sometimes, in the early stages, doctors simply refer to the "undifferentiated" condition as a collagen vascular disease or undifferentiated connective tissue disease until more defined symptoms appear. The change into a more definable disease may occur over years or never happen. Furthermore, the undifferentiated features may, themselves, disappear at which point there is no disease at all.

Peridot20_Gem
03-09-2011, 05:50 PM
Wendy URTICARIAL VASCULITIS


What is Urticaria?
Urticaria skin disorders cause reddened patches and wheals to form on the skin. Wheals are swollen patches of skin, which can vary in size from a few millimeters in diameter to several inches. In severe cases wheals may cover very large areas of skin, such as the chest or back. Wheals are patchy in color, with areas of pale and reddened skin. They are often itchy.


Urticaria develops when immune cells called mast cells release chemicals in the skin. These chemicals, which include histamines, cause blood vessels in the skin to become leaky, allowing excess fluid to seep into the skin. The excess fluid leads to swelling, and the chemicals can cause skin itching.


In urticarial vasculitis, blood vessels become inflamed in addition to skin inflammation.

Signs and Symptoms of Urticarial Vasculitis
The first sign of urticaria vasculitis is painful, burning urticaria lesions. These painful sensations indicate that blood vessels are becoming inflamed. If itching is present it can become more severe as the inflammation worsens.


Vasculitis lesions are reddish in color, and are often pale in the center. There might be small spots of blood called petechiae under the skin.


These lesions might remain for 24 hours or longer before they begin to heal. As the lesions heal they can begin to resemble bruises, with the skin becoming darker before returning to its normal color.


Some people develop other symptoms in addition to skin lesions. Possible symptoms include sensitivity to light, swollen lymph nodes, fever, joint pain, abdominal pain, and breathing difficulty. More rarely, lung or kidney problems can develop.

Causes and Risk Factors
In most cases, urticaria vasculitis is idiopathic, which means it has no known cause.


In some cases, however, this condition is associated with certain disorders of the immune system. These include the inflammatory connective tissue disorders such as Sjorgen syndrome and systemic lupus erythematosus, immunoglobulin disorders, and leukemia.


Certain viral diseases, including hepatitis B and hepatitis C, and infectious mononucleosis, are also associated with this type of vasculitis.


In addition, there are some medication types that can increase the risk in some people. These include penicillin, ACE inhibitors, the antidepressant fluoexetine (Prozac), and thiazide diuretics.

Treatment Options
Most people with this skin condition have a good prognosis, although healing is often slow. It is common for treatment to help resolve the condition within months, or occasionally a year or longer. In some cases, the disease may become chronic, requiring long-term treatment to manage the symptoms. This skin condition is only dangerous or life-threatening in cases where kidney or lung problems develop as a result of systemic disease.


Treatment is usually based on how long the vasculitis lesions have been active, and whether the lesions are painful, burning, or itchy.


Most patients will consult with a dermatologist to confirm the diagnosis and determine the best course of treatment. Alternatively, a biopsy is taken of a skin lesion, and this skin sample is examined by a dermatologist. Patients might see other specialists depending on their individual situation; someone with lupus might see a rheumatologist, while someone with allergic urticaria might see an allergist or clinical immunologist.


Common medications include antihistamines and non-steroidal anti-inflammatory drugs, which are prescribed for people who have only mild to moderate skin lesions, with no involvement of other organs or body systems. People with more severe disease might be prescribed a short to medium course of corticosteroids to suppress the inflammation.

Peridot20_Gem
03-09-2011, 05:56 PM
Wendy Pernicious anemia

What is pernicious anaemia?
'Pernicious' means having a harmful affect, often in a gradual or subtle way, and anaemia means a low level of red blood cells. However the name pernicious anaemia is used for a specific condition where the body is unable to absorb enough vitamin B12 into the body from the gastro-intestinal tract.

Top
Symptoms
The symptoms of anaemia include tiredness, light-headedness, shortness of breath and heart palpitations. Other symptoms that may arise from a vitamin B12 deficiency are soreness of the tongue and mouth, weight loss and bouts of diarrhoea. Vitamin B12 is also needed to help keep nerves healthy, so if a deficiency isn't treated there may be tingling and numbness in the fingers and toes, weakness and balance problems, memory loss and confusion.

Top
Causes and risk factors
Pernicious anaemia is caused by a lack of vitamin B12. This vitamin is vital for the manufacture of new red blood cells. When it's in short supply, red blood cells are produced in smaller numbers, are abnormally large in size (megaloblastic) and don't last as long as they should. Consequently, anaemia develops.

Pernicious anaemia develops when the body becomes unable to absorb vitamin B12 properly from food. Normally a protein known as intrinsic factor, which is made in the stomach, attaches to vitamin B12 and carries through the intestinal wall into the blood stream. However in pernicious anaemia, the stomach cells that produce intrinsic factor become damaged, vitamin B12 is no longer absorbed and a deficiency develops, leading to anaemia.

Such damage can occur as the result of an autoimmune disorder, where the body attacks itself. This tends to run in families and is more likely to occur if someone already has had other auto-immune diseases of the hormone glands such as thyroid disease or diabetes.

Anything that reduces the number of intrinsic factor-producing cells - for example, stomach surgery, ulcers or cancer of the stomach - may also result in deficiency. One of the commonest causes is simply thinning or atrophy of the cells that line the stomach, which occurs with age. This partly explains why pernicious anaemia is most common in older people - around one in 8,000 people over the age of 60 has pernicious anaemia and it is much more common among those over 80. It also affects women more than men.

Vitamin B12 deficiency can also occur for reasons other than pernicious anaemia. In some people, the deficiency arises because there is just not enough B12 in the diet. Vitamin B12 is only found in foods of animal origin, such as meat, fish, cheese, eggs and milk, so a strict vegetarian or vegan diet, without vitamin supplements, can lead to a deficiency. Vegans in particular should make sure their diet includes food fortified with B12.

Other causes of B12 deficiency include certain medicines (especially some used for tuberculosis), heavy infestations of intestinal parasites, and rare metabolic disorders.

A simple blood test can diagnose anaemia and an examination of the red blood cells can determine whether they're larger than normal. If this is the case a Schilling test, which measures the body's ability to absorb vitamin B12 from the bowel, will determine whether it's pernicious anaemia. However for most people on a normal diet, especially the elderly, a Schilling test is not thought necessary. Instead, a blood test is done to measure levels of vitamin B12 (and also folate – another nutrient which, if deficient, can cause megaloblastic anaemia). If B12 levels are low, pernicious anaemia is presumed and treatment started.

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Treatment and recovery
Treatment for pernicious anaemia is highly effective and involves an injection of vitamin B12 (it isn't absorbed properly if given by mouth). Once the deficiency has been corrected, a maintenance dose of vitamin B12 is given every three months for life. With treatment, the majority of people make a full recovery.

Peridot20_Gem
03-09-2011, 05:59 PM
Wendy,
I hope the info helps for you to understand what he's mentioned mate, till you get your other results through and do takecare mate.

Hugs Terri xxx

serand4
03-09-2011, 06:29 PM
Hi - I have the exact same issues lung/chestwise as you do. At first, it was just as the lupus started and turned out to be blood clots in my lungs. After those cleared, I continued with the pain and shortness of breath. I use a neubulizer whenever the breathing gets too tough, but I rarely have to now. Now I'm just more accustomed to the pain and know to take it easy the moment I start to hack-cough. I have to see another pulminary doctor soon as my first pulm. doc diagnosed me with shrinking lung disease but then things got complicated due to my ANA numbers. Nothing is easy or straight forward with this disease. And if there is one consistency, it's that the rheum. docs never quite know what to tell you or have the time to educate you. I'm in a very frustrated place myself but my only suggestion is to be sure to sit down and rest when you hurt. I find that valium really helped -- why, I don't know and I use very little, but it does help. Maybe it just makes me less frightened. Keep us posted and do what I finally did in the ER one night...I grabbed the doctor by the hand and said "you have to admit me and help figure this out!!! I am SO sick!" I got admitted and finally got my pcp to agree that there is no way I'm suffering from fibro only. I also have extensive documentation on the joint swelling, redness, fever -- all the things that spell out Lupus, even without the high ANA numbers. Hopefully, that will get me into one of the top hospitals here in St. Louis so I can get the shrinking lung issue addressed as well as the multitude of new symptoms that are creeping up.

Take care and God bless.

Peridot20_Gem
03-09-2011, 06:38 PM
Serand,
I agree with what you said mate on the aspect's mentioned but grab a doctor over here in the UK you'd soon sectioned and locked up or done for assult, just because you feel so flustrated and only want answers.

serand4
03-09-2011, 06:45 PM
I believe it! I was even taking a risk in our ER, too. It's pure desperation. I had actually had this ER doc before so I felt a little more comfortable doing this but you're right, caution is the best way.

Peridot20_Gem
03-09-2011, 06:54 PM
I will say this though my temper does over rule me bad and when they rushed me into A&E here the once the doctor was taking so much time in messing about and the cubicle i was in was full of blood from a fall plus i was on wulfrin so blood was gushing out like mad, i had a cob with me to eat afterwards i actually throwed it and hit the doctor on the back of his head, then i was took into theatre but when i had to attend again oh i did get a serious WARNING.

Chachi
03-09-2011, 08:05 PM
Thanks Terri-I really appreciate all of your help and support. Have a good sleep.

Wendy

Colleenc
03-09-2011, 08:16 PM
I have the same feeling in my chest, except it hurts when I take a deep breath in. I have had multiple pulmonary embolisms (blood clots) which have left my lungs scarred. I also have nodules (they don't know what they are maybe the lupus or something else) they are just keeping an eye on them. If you feel short of breath, VERY fatigued, and it hurts when you breath, you should go to the ER these are the signs of a blood clot! The test your doc ordered sound like he's on the right track. I will keep my fingers crossed for you!!

Chachi
03-09-2011, 08:21 PM
Hi Kitten,
Thanks for the response and sharing some of your story. It is so sad that we have to "convince" some doctors to help us and take us seriously. That is how I felt at my appt. yesterday-I had to have a little rant to get him to really take notice of me, and I still don't think it was enough-because I quickly read his notes on my way to dropping them off to his secretary-and some of the info. he wrote about me was inaccurate/some of it was the opposite of what I told him i.e. that I didn't complain of mouth or nose ulcers-when I clearly told him that I currently have them and other things that he didn't even ask me about...Now I could kick myself for not marching back into his office and calling him on it! I could go on but I think what my point is, is that this misinformation in my notes made me feel like he really didn't give 2 shits and wasn't really listening to me.........How am I supposed to have faith that he is going to help me?
How are your lungs these days? How did it start-did you have shortness of breath right away? and how did they determine that you had clots?from what? Sorry-so many questions...
Hope all is well and that you are having a good evening.

Wendy


Hi - I have the exact same issues lung/chestwise as you do. At first, it was just as the lupus started and turned out to be blood clots in my lungs. After those cleared, I continued with the pain and shortness of breath. I use a neubulizer whenever the breathing gets too tough, but I rarely have to now. Now I'm just more accustomed to the pain and know to take it easy the moment I start to hack-cough. I have to see another pulminary doctor soon as my first pulm. doc diagnosed me with shrinking lung disease but then things got complicated due to my ANA numbers. Nothing is easy or straight forward with this disease. And if there is one consistency, it's that the rheum. docs never quite know what to tell you or have the time to educate you. I'm in a very frustrated place myself but my only suggestion is to be sure to sit down and rest when you hurt. I find that valium really helped -- why, I don't know and I use very little, but it does help. Maybe it just makes me less frightened. Keep us posted and do what I finally did in the ER one night...I grabbed the doctor by the hand and said "you have to admit me and help figure this out!!! I am SO sick!" I got admitted and finally got my pcp to agree that there is no way I'm suffering from fibro only. I also have extensive documentation on the joint swelling, redness, fever -- all the things that spell out Lupus, even without the high ANA numbers. Hopefully, that will get me into one of the top hospitals here in St. Louis so I can get the shrinking lung issue addressed as well as the multitude of new symptoms that are creeping up.

Take care and God bless.

Chachi
03-09-2011, 08:33 PM
Hey Toots,
How are you? Did they get all the shrapnel out? Just a little joke, but seriously I hope that you are feeling better, and that the antibiotics are killing two birds with one stone. My NP was wondering if the chest pain could be indigestion-but it doesn't feel like my regular acid regurg. How do you tell the difference between digestion/esophagus problems and chest/lung problems? I'll keep what you said in mind-and keep an eye on it. Would blood clots turn up on a chest x-ray? They must
How goes the search for a new NP/Family Doctor?

Hope all is well,
New and Improved "Little Guppy"!!!!!!!
QUOTE=Colleenc;81529]I have the same feeling in my chest, except it hurts when I take a deep breath in. I have had multiple pulmonary embolisms (blood clots) which have left my lungs scarred. I also have nodules (they don't know what they are maybe the lupus or something else) they are just keeping an eye on them. If you feel short of breath, VERY fatigued, and it hurts when you breath, you should go to the ER these are the signs of a blood clot! The test your doc ordered sound like he's on the right track. I will keep my fingers crossed for you!![/QUOTE]

~LUVMYFLOWERS~
03-10-2011, 04:45 AM
Hi Chachi,
Ive also been haveing breathing problems & very shot of breath and acid reflux, gonna demand a chest x-ray this week at my dr's appt.
Wishing you the best of luck on all your test, And hope you feel better soon!!!!
~Diane~

Peridot20_Gem
03-10-2011, 04:49 AM
Hi Wendy,
I've had deep vein thrombosis and that always starts with a clot in the calf and untreated the clot can move and either to go straight to your heart or lodge in the lungs, then travels to the heart and your in serious trouble then but like colleen mentioned having clots on her lungs that's usually more from plurisey which i've had twice and was lucky no clots developed, colleen i hope they scanned your legs mate also.

Wendy if they find you've got sjogren's disease or systemic lupus like myself either one can cause that pain as well but as soon as you get your result's let us know mate.

Love to you both Terri xxx

lovehubby
03-10-2011, 07:43 AM
It sounds like he is doing everything that I had done to me good luck
michele

Chachi
03-10-2011, 08:36 AM
Hi Chachi,
Ive also been haveing breathing problems & very shot of breath and acid reflux, gonna demand a chest x-ray this week at my dr's appt.
Wishing you the best of luck on all your test, And hope you feel better soon!!!!
~Diane~

Hi Diane,
Haven't talked to you in a while. How are you? Hope you get your symptoms sorted out soon. It's just one thing after another sometimes eh! Hope you found something good to take for the acid reflux-because it sure is painful/can make it hard to sleep.

Have a good day.

wendy

SandyR
03-10-2011, 08:47 AM
Hi all,

I had my first appt. with rheumy yesterday. He was rushed and not very methodical, I sure hope he knows what the heck he is doing. He sent me for some tests: ESR, CRP, AST, ANA, anti ds DNA, ANCA, B12 folate, iron, ferritin, TIBS, CBC, creatinine, ck, alt and urine. Does that sound about right? Fingers crossed that he can figure this out. He mentionned Lupus and connective tissue disease as well as urticarial vasculitis and pernicious anemia.....Once again it's the waiting game now. I'm worried that nothing is going to turn up and meanwhile I'm still feeling horrible and missing tons of work.... I have a new symptom-chest pressure/pain-in the middle -I think it might be my lungs. It feels heavy, and a tiny bit harder to breathe-no stabbing pains. I had it almost all day today-and now it hurts in the back as well. Sound familiar to anyone? It doesn't really sound like pleurisy??My NP sent me for a chest x-ray-haven't heard anything yet
Thanks in advance for any feedback. I'm trying to stay positive.

wendy

Hi Wendy -

I think it sounds like he's running the gamet. That's good.

The ESR is a test I am familiar with - I actually need to go get my blood drawn for one this weekend. It's full name is the Erythrocyte Sedimentation Rate and it's used to confirm diagnosis of an inflammatory process in your body by determining how much inflammation is occuring in your body at the time of the test. It can not tell you why you have that inflammation - just that you do and how much. Here's a good overview of the test - http://www.ehow.com/about_5046296_esr-blood-test_.html.

The Creatine test is a kidney functioning test to see if your kidneys are spilling protiens. He might have ordered a BUN (Blood Urea Nitrogen) test with it because together they give a better picture of what your kidneys are doing. http://www.labtestsonline.org/understanding/analytes/creatinine/test.html

As for that chest xray - call the dr! Find out what it shows. Please don't wait on that.