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View Full Version : Lupus or not??? Sorry for beeing so long!



tia
05-17-2008, 11:29 PM
I don't know yet if it's Lupus or not but I really need some opinions. I saw lots of doctors, but nobody knows what's wrong with me..this is so frustrating.
I am 30 and I started having low back pain and some strange sensation behind my knees last year. In november I had a positional vertigo, I recovered in couple of months but I still feel it sometimes. Also, last year I started to have some white patches on my hands, arround the joints. Also I feel fullness in the ears and some pain sometimes.
My blood tests,urine, CRP, ESR, TSH are ok, I have a positive ANA (1:80 speckled, centriole), muscle enzymes 190 (normal 140). I've seen a rheumatologist and he did all my tests (Anti-Dna, Anti-Sm, Anti-Rnp, Anti-SSA, Anti-SSB, Anti scl-70, anti-jo-1 all negative).
They found my Ac IGG for Citomegalovirus very high, 250 (normal is 3). I read about this that could be the trigger for autoimmune disease, especially for lupus. I also found that cmv infection could represent a positive ANA. I have also Ac Igg Toxoplasma 43, which is also high.
In the last month I started to experience:
-pain in all the joints (low back pain is really bad)
-mouth sores
-muscle pain (neck, shoulders, hands, feets), muscle spasm and twitches...in my eye lids, and stomach, but also all over (EMG -OK)
-very low blood pressure 8.5
-swollen limph nodes,
-sun sensitivity for couple of years,
-cold sensitivity, cold urticaria (on the hands, knees, and feets),
- itchy skin and stings arround the joints and all over
- low back pain and if I touch my nape I feel it numb
-some small sores on my scalp,
- hair loss (I have it for couple of years but now it is really bad)
- incresed appetite (this is strange, I know that Lupus's symptom is lack of appetite)
-no specific rashes
-fever 98.6-99.5
-the tissue on my rib cage is inflammated and if I press I feel pain and stings,
-shortness of breath,
-pain behind the eyes, I did a MRI and everything was ok.
I repeted the TSH and increassed at 6 (maximum 4), but it is probably beacause my anxiety.
I feel stabbing pain in the muscle, joints. My inner elbows are inflammated , and I think behind the knees also...
Everything started after we moved to Canada, it was a period of stress and I was feeling very tired.
I'm so desperate, so pls help me !!! What could be? I'm thinking to have a baby, and if it's Lupus I'll find out probably after I give birth or when I'm pregnant...But I would love to have a healthy kid, and to be able myself to take care of my family. I was a very active person before, and for couple of months I'm so down..Pls help me with some advices..It's too much for me right now ..Thank you for beeing here!!!

racinie
05-18-2008, 06:02 PM
That sounds rough. You must be very frustrated. I have no idea if you have lupus or not, but based on your description, I can see why you might think it's a possibility. I really hope that you get whatever this is under control!

Saysusie
05-18-2008, 06:42 PM
It is very difficult to tell you if you may or may not have Lupus. The diagnostic process is quite lengthy (sometimes taking up to a year), primarily because Lupus is such an unpredictable disease. Symptoms may develop slowly, symptoms change, symptoms disappear and new ones appear. Additionally, Lupus symptoms can resemble so many other rheumatic, connective tissue, auto-immune diseases.
Yes, many of the symptoms that you listed are felt by patients with Lupus. The difficulty is the fact that you have a high ANA but all of the other indicators appear to be normal. Many diseases have a high ANA and many of your symptoms also fit some of these diseases. The ANA may be suggestive of another disease, either rheumatic or non-rheumatic. Most people that have an elevated ANA do not have lupus. Elevated ANA's can often be found in "normal" individuals and have no significance or unknown significance. A high ANA may be reactive to an infection. All of the following can have a high ANA:
* Rheumatoid arthritis. More than one-third of people with rheumatoid arthritis have a high ANA titre.
* Systemic lupus erythematosus (SLE). Almost all people with SLE have a high ANA titre. However, most people with a high ANA titre do not have SLE.
* Scleroderma.
* Sjögren's syndrome.
* Polymyositis.
* Raynaud's syndrome.
* Autoimmune diseases of other organs, such as:
* Addison's disease.
* Diseases of the blood cells, such as vitamin B12 deficiency, idiopathic thrombocytopenia (ITP), and hemolytic anemia.
* Liver disease, such as hepatitis.
* Thyroid disease, such as Hashimoto's thyroiditis (probably not your case, since your TSH was normal).
* Medicines, such as those used to treat high blood pressure, heart disease, and tuberculosis (TB).
* Viral infections.
It is not common for Lupus to develop due to a specific region change. However, it is VERY common for Lupus to develop due to stress (in fact, it is thought that almost 80% of patients feel that they first noticed symptoms of Lupus after stressful times in their lives). So, I do not think that leaving Canada will resolve your issue if you do, indeed, have Lupus (or any other auto-immune disorder). The best thing that you can do, while awaiting a diagnosis, is to try to alleviate as much stress as you can.
Also, it is quite possible to have successful pregnancies and healthy babies when you have Lupus. Most doctors will want you to get your symptoms under control before trying to conceive.
I hope this has been somewhat helpful to you. We are here to help you as much as we can. Do try not to stress so that you can work towards getting your symptoms under control.

Peace and Blessings
Saysusie

sick n tired
05-18-2008, 10:25 PM
Hey Tia,

I responded on another of your posts....I am sorry to hear that you are having such a hard time. I don't think that a move in and of itself is a trigger to a flare up, but stress and depression could be....the move coming from a different country could be pretty stressful.

Has your doc checked you for Fibromyalgia? That is autoimmune, but not life threatening. It is like arthritis of the muscle. That might explain some of the symptoms...if you have it.

I hope that this week will be a turning point with you and you will start feeling better.

tia
05-19-2008, 08:06 AM
I am from Romania where it's a mild climate. In Vancouver is very humid and I noticed that cold and wet wether is not good for me. In my country I worked in financial field, this is quite stressfull sometimes, and when I came in Canada I found a job in the same field... :cry: Starting January I started some courses and I was very tired. So, in my case it was lot of stress recently, and probably I had something wrong with me before moving here. In my native country life is not easy, so I don't know if moving back it's an alternative. Thank you so much for all your answers. It helps a lot to find some people who can listen.... I've seen couple of doctors and everybody is telling me that is stress, depression... but I know it's smth else...you're looking fine ..you're ok.. that's what I hear for almost half of year..

tia
05-19-2008, 08:19 AM
They did other tests and found some crioglobulines in my blood, they said it's related to cold sensitivity. And they did a test named Lupus cells, the cells specific for Lupus are absent but they found nucleo-phagocitosis in small quantity. Anybody knows what it means? I repeated my Tsh and it is 6.03uUI/ml (max is 4). The doctor told me to do the tests for Autoimmune Tyroid. .. I studied medicine in these 6 months for a life, but still no answers..

Saysusie
05-19-2008, 10:38 AM
Hi Tia;
Cryoglobulins are abnormal proteins. Cryoglobulins are associated with several disorders, including those that affect the skin, joints, kidneys, and nervous system. This test is most often done when a person's symptoms suggest a condition that is associated with cryoglobulins. Cryoglobulins are associated with several disorders, including those that affect the skin, joints, kidneys, and nervous system (as does Lupus).
A positive test may indicate: Systemic Lupus Erythematosus, Hepatitis, (especially hepatitis C), Infectious mononucleosis, Leukemia, Lymphoma
Macroglobulinemia - primary, Multiple myeloma, Rheumatoid arthritis,
Nephrotic syndrome.

Nucleophagocytosis is the engulfing of the nuclei of other cells by phagocytes. LE (lupus erythematosus) cell test measures the presence of a special cell found mostly in patients with systemic lupus erythematosus. About 50 to 75% of patients with lupus have a positive test. In SLE-sera (blood) antinuclear antibodies prevent normal nuclear degeneration. In sera with high titers, small rigid LE-bodies develop rapidly, which are soon phagocytized completely by neutrophil granulocytes and monocytes at which point, classic LE-cells are formed.
The different appearance of the phagosomes in the monocytes is a result of the different digestive processes occuring in these phagocytes. With decreasing serum activity, the LE-bodies expand somewhat more and become viscous. From these nuclei, relatively small portions are phagocytized fairly late. Sjögren-cells of the granulocytic as well as the monocytic type are generated. Nucleophagocytosis only occurs in the presence of antinuclear antibodies (ANA).

I know that this sounds a bit technical to you and I tried to translate it as best as I could. In essence, your doctors are looking at all of the indicators that might suggest Lupus. While you have some, you do not have others. But the ones that you do have are highly suggestive, so it appears that they might be leaning towards Lupus.

Peace and Blessings
Saysusie

sits_inthe_corner
05-19-2008, 10:38 AM
Hi tia,

I have no answer for your question, but there are other's here more knowledgable who will read your post and hopefully have an answer.

When people say that too you about it being just stress and depression, keep in mind that there is not "just" about it. Stress is an enamy. It can trigger our bodies to react and put is into a up. Swelling, pain, tiredness, hives...and a whole list of other things.

I understand about the cold issues. I live on the east coast of canada. I'm in Nova Scotia. Pretty much cold and damp here all the time.

This weekend is foggy cold and damp. My bones and joints ache. It's the middle of May and I'm bundled up like it's the middle of winter.

I hope you feel better soon. :)

tia
05-19-2008, 08:28 PM
Thank you so much for everything! I'll keep you in touch with everything.