I may need a membership to the club soon. I have recently got back my ANA results which has detected 160 Nucleoar. I've done some research and am pretty sure this means I have something. There is one problem however.
I "fired" my GP because he stated that "you should see a psychiatrist" before the test results came in.
I am due to see a specialist in a month but wanted some help in regards to my symptoms.
I am very weak and sore a lot of the time, and I suffer from these strange swooning type attacks on a daily basis. It is hard to describe, I start feeling a little funny and then need to lie down. I feel extremely weak, my upper back aches and I drown in brain fog for about 20 mins. These attacks vary from mild to severe and I feel VERY drained afterwards.
I was wondering if anyone suffers from the same sort of thing? And if so, what exactly they have been diagnosed with?
OMG!!! swooning attacks, thats a perfect description, I never knew exactly how to explain how i felt, i mean dizzy didnt seem like the right word, weak alone doesnt explain it, its more like (for me anyway) overall weakness, dizzyness, heart pounding, feeling like im gonna pass out when i stand up. I have been diagnoses with Lupus, fibromayalgia, and i also have chronic pain from having lyme disease that went undiagnosed for a while...or the pain is from lupus, (joint pain, muscle pain, headaches etc.) im not sure which disease causes what. anyway, when it happens, i also have to just lie down....i also feel like my head is being squeezed....after lying down for a while, it subsides. This is the reason i hate going anywhere....its hard to just lie down in wal-mart if it hits....i tell people sometimes, "if i dont lie down im gonna fall down".
Reading your response made me smile! Not because it's a good thing but because it finally feels like someone understands me! I'm going to see my new and improved doctor today so hopefully I can arrange some more tests to see what it is exactly.
Nucleolar pattern is not often seen in SLE (lupus) and suggest scleroderma.
I too have had swooning symptoms. Thought they were blood sugar related. But were not. I did have an elevated C-peptide (which "could" indicate an insuline producing tumor) I was dx w/ lupus and am on plaquinel. I still get vertigo when I flare really bad, but these don't happen very often.
I'm not sure what the symptoms of scleroderma are, but I know lupus can attack every system in your whole body including the nervous system.
I won't bore you with all my symptoms but the most worrying is the nausea, muscle weakness, these swooning attacks, and pain in my back and shoulders. I also get dry eyes and dry mouth a lot. Constant abdominal bloating and the urge to urinate an hour after I drink anything.
I have been researching lupus, and scleroderma and other auto immune stuff.
It's strange but I'm starting to DREAM of a diagnosis. Even if it IS a chronic disease! I just want some answers after 6 months, 5 specialists and no results!
Thanks so much for your response. I really appreciate it.
I got some info froma medicine net web site on scleroderma. Does any of this sound familiar?
Symptoms of scleroderma?
The symptoms of scleroderma depend on the type of scleroderma present and the extent of external and internal involvement in the individual affected. Because scleroderma can affect the skin, esophagus, blood vessels, kidneys, lungs, blood pressure and bowels, the symptoms it causes can involve many areas of the body.
Scleroderma affects the skin to cause local or widespread signs of inflammation (redness, swelling, tenderness, itching, and pain) that can lead to skin tightness or hardening. These skin changes can be widespread, but it's most common for them to affect the fingers, feet, face, and neck. This can lead to decreased range of motion of the fingers, toes, and jaw. Tiny areas of calcification (calcinosis), while not common, can sometimes be noticed as hard nodules at the tips of the elbows or in the fingers.
Scleroderma affecting the esophagus leads to heartburn. This is directly a result of stomach acid flowing back up into the esophagus. Sometimes this can lead to scarring of the esophagus with difficulty swallowing and/or localized pain in the central chest.
Blood vessels that can be affected include the tiny arterioles of the finger tips, toes, and elsewhere. These vessels can have a tendency to spasm when the areas are exposed to cold, leading to blueness, whiteness, and redness of involved fingers, toes, and sometimes nose or ears. These color changes are referred to as Raynaud's phenomenon. Raynaud's phenomenon can cause inadequate supply of oxygen to the involve tips of fingers or toes, causing tiny ulcers or blackened (dead) skin. Sometimes Raynaud's phenomenon is also associated with tingling. Other blood vessels that can be involved in scleroderma are the tiny capillaries of the face, lips, mouth, or fingers. These capillaries widen (dilate) forming tiny, red blanching spots, called telangiectasias.
Elevated blood pressure is potentially serious and can lead to kidney damage. Symptoms include headache, fatigue, and in severe cases, stroke.
Inflammation of the lungs in scleroderma can cause scarring, resulting in shortness of breath, especially with physical exertion. Elevated pressure in the arteries to the lungs (pulmonary hypertension) can also cause shortness of breath and difficulty getting an adequate breath with activity.
Scleroderma affecting the large bowel (colon) most often causes constipation but can also lead to cramping and diarrhea. When this is severe, it complete stool blockage (fecal impaction) can result.
**It is not uncommon to have several things going on at the same time. Especially in autoimmune disorders. It sounds like you could have a touch of fibromyalgia, scleroderam and sjorgren's. Although I'm not a dr., just an educated guess.
I was reading something about Sjorgrens and It definitely had me nodding my head.
I can't wait to discover that I am suffering from not one but SEVERAL Autoimmune disorders. HURRAH!
Can I ask you what your next step towards diagnosis was after finding out your own raised ANA levels? I mean, do I ask for more blood tests relating to each individual disease? Or do I ask for a referral to a rheumatologists straight up?
I didn't discover the elevated ANA on my own. A dr. who thought he was looking for RA did. But it was 160 and was said to be non significant. It wasn't until many months later, and many other test that it leaped up to 2,560. Which is very significant.
Actually, this whole thing does not fall into a hurrah category. When the ANA was 640 and my GP told me i was looking like lupus I told him I thought he was wrong and went home and cried. I didn't sleep very well that night. Didn't tell anyone except my husband for 6 months. I actually didn't tell anyone untill I got the official dx. People treat chronically ill people different and it becomes inposible to get life insurance. There are mounds of complications.
I understand you are just wanting some answers to the weird things going on in your body. And to have a label, it helps people say, Oh I understand. But in all honesty, they don't. It's just wishful thinking on our part. Just don't get your feelings out there too far.
Thanks for asking. Today has been flary, but prayfully tomorrow will be better. I'm hoping to go to a revival Friday night, and feeling much better than today.
I'm certainly not looking forward to a long drawn out possibly multiple dx.
I've had my fair share of sobbing in the shower quietly so my boyfriend can't hear.
I hope you get to go to your revival on Friday! I know what it's like to want to go to something exciting or important, and not being sure if your body will let you. I've become verbally assertive with my body! "you WILL be strong enough to go to your brothers wedding..."
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