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Really really don't know what 2 do

352 Views 5 Replies 6 Participants Last post by  Pink Pearl
Hi's been awhile since I have been here....I keep leaving but keep coming back as so many things that are going on seem so much like me...

We are still searching for a diagnosis which I come to believe will never be achieved. My question is how many years can it take for your ANA to change? Every test I have taken so far in the past 3 years has been negative.

However symptoms continue to keep creaping up that no one can figure out. The worst one so far was the movement disorder. My arms and legs became very hard to move. My muscle tone was awful. I have regained some of it back but not all. The pheriphiarl neuropathy seems to be spreading from my legs to including my arms now :(

I have severe pelvic pain that no one can find the cause of. The say it is not interstational cyctis because the inside of my bladder looks fine, I get more uti's then normal but even when not having a uti the pain is so horrible I can't stand it.

Just looking for some words of encouragment.

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Hi Marti

I wanted to say how sorry I am that you are suffering so much. This is often made much harder by not knowing the reason why. I dont know how long it takes for the ANA to become positive I am afraid, however I am sure that someone more knowledgeable will be along shortly.

In the meantime I wanted to tell you not to give up in your search for answers. Hope you feel better soon.

Hi Marti,

I'm sorry things are not improved for you yet :( :hug:

I was looking back through all your posts and see that they diagnosed you with mitochondrial disease. Obviously you are having other symptoms which you don't feel fit into that diagnosis.

Cleveland Clinic site says that its hard to diagnose and lists the following as signs and symptoms:

Depending on which cells of the body are affected, symptoms might include:

  • Poor growth
  • Loss of muscle coordination, muscle weakness
  • Visual and/or hearing problems
  • Developmental delays, learning disabilities
  • Mental retardation
  • Heart, liver, or kidney disease
  • Gastrointestinal disorders, severe constipation
  • Respiratory disorders
  • Diabetes
  • Increased risk of infection
  • Neurological problems, seizures
  • Thyroid dysfunction
  • Dementia (mental disorder characterized by confusion, disorientation, and memory loss)
I know you are also diagnosed with APS which could explain some of the above symptoms anyway.............

What meds are you currently on?

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I know right now it does not seem like there will ever be an answer to your confusion, but hang in there it will happen. I have never had a pos. ana test mine was done on biospy by a dermy that seems to be pretty brave from what I hear lol. There are other ways to find lupus or whatever you are looking for. There is never just one way to find out what you have. You just need the right person to do the right test that will put everything into place for you. Are they doing other tests to find out what is not causing the problems? Sometimes it is a matter of ruling things out to find out what it is. Well, I know things seem bad at the moment but keep your chin up and we are always here if you need to talk to someone. I hope you feel better soon and find an answer even sooner.
Hi Marti,

I am sorry your suffering, so. I hope you get some answers, as to why your having so many symptoms, soon.

I was diagnosed with Fibromyalgia...years, before my a.n.a turned positive.
However, my regular M.D. said, it was because the lab, was doing the test wrong..I finally, was referred to a Rhuemy, and my bloodwork, was sent to a different my a.n.a, finally came back a high positive.

I don't think..that is very common, however.

I hope you feel better soon, Marty. Please stay in touch, and let us know, if we can help you.

Best wishes Always,
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Hi Marti,
I am another person who has never had a positive ana. I have had positive other things, ds dna, apl, acl, but never a ana. Some of us don't..... I get irritated when a doctor puts all the eggs in the ana basket, and doesn't go further. Had a GP investigated further, I would most likely have been diagnosed 10 to 15 years before I was. My records show I was tested for ana's WAY back.....but since I am ana neg, I was not properly diagnosed.

In my case, by the time I was diagnosed, I was hitting 8 or 9 of 11, so the ana wasn't needed. I also have peripheral neuropathy in my legs, left worse than right, and both hands. The left leg is the worst......but it also was worst with cellulitis too.
I also have constant lower right abdominal quadrant pain. One of my major symptoms was peritonitis, and it has come and gone. In some of us, that is a constant, it just varies in amount of pain to not. The peritoneum falls in the serous membrane...... so there you go.

Lupus can and does mask itself as many other things. Hang in there, document, keep a journal, and you will eventually make sense of it.
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