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Hi I'm country bumpkin, Iv had weird symptoms going back at least 15 years ,since early 2000,s Iv had numbness that started with lips, then upper an lower,nose,tongue,forehead. Having suffered with cluster migraine for 20+ years. last couple of years much more constant,especially during warm whether. Dry eyes i tolerate till they feel like grit.Butterfly rash on face,but it fades.Hot [email protected] time.Muscle aches an pains to point of crying. what feels like throat constriction.Swollen feet an hands each morning/ fluid retention.A persistent cough IL have all winter,but worse in mornings. feeling really tired,but don't go to sleep easily,then wake in early hour then can fall into heavy sleep when i should be getting up.Arms go dead in the night.Thinning hair,if I'm on feet a while i have profound weakness affecting my whole body,especially in warm weather,its like i need a carer. its depressing and list goes on! How do people on own there handle these symptoms an care for self.I feel like im walking a tight rope.Iv had a positive ana test,but next negative.How positive many tests confirms lupus?
 

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Hello and welcome :)

I was replying to you and then hit the wrong button and the whole lot disappeared :(

Do you have any idea what the positive ANA test titre was? 1:180, 1:320, 1:640, 1:1280....

Lupus is a very complex disease and cannot be diagnosed on blood tests alone. Diagnosis is achieved through a combination of tests, clinical examination and symptoms. Low positive ANA is found in many people who are perfectly healthy and therefore would usually be discounted. ANA itself, even if at a higher level, is also found in other auto-immune diseases.

I'm wondering whether you have been referred to a rheumatologist. They are the ones that specialise in auto-immune connective tissue diseases and few other doctors are sufficiently specialised.

Your symptoms certainly warrant further investigation and I think that an appointment with a good rheumy would be a good place to start. If you need a recommendation for your area, you can post in the find a doctor section and hopefully someone in your area will know of someone. There are not that many good lupus rheumies.

If you do have lupus, you should find that being very careful about sun exposure would help your feelings of weakness in hot weather a little. The sun can be very dangerous to us (even those that don't burn) and can cause inflammation and make disease activity flare.

hugs :hug:
Katharine
 

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The Other Illinois Tammy
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country,
Hi and welcome to the site. It sounds like you have had a time with some symptoms. What meds are you on for any of this? It sounds like some fluid pills would help you and that you should keep on the doctors to get some meds to help with the other things going on with you. I do hope to see you in the chat room. It is a chance to get instant feedback to questions and concerns you may have. I hope you start to feel better soon.
 

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Welcome to the forum.

Have you seen a neurologist for the numbness and headaches? If not I suggest you ask for a referral.

The rash can come and go. On occasion mine gets very hot also. The next time your rash appears I suggest you take a photo of it to show the doctor.

Weakness is one of my problems also, especially in warm weather. I found the best thing to do is listen to my body. When the body suddenly feels drained or starts shaking I sit down and rest. It isn't being lazy, it is giving your body a chance to recoup.

It is depressing dealing with your type of symptoms day in and day out and not knowing what is wrong. Don't give up, keep after your doctor. You might also want to consider a second opinion. Many of us had to see numerous doctors before finally being diagnosed.

Take care,
Lazylegs
 

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Hi and welcome.

Lazylegs gave you great advice.

Listen to your body and push forward until you get answers.

My ANA fluctuated from negative to positive for a while but now it is always positive. I hope you get some answers and get on meds to start feeling better.

I also agree that you should see a Neurologist. It certainly would not hurt.

Hope to get to know you better.:wink2::wink2::wink2:
 
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