Positive IGG Antibody (ANA) - please help me!! Anyone!!

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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 12th, 2014, 4:13 am

Yuliasir wrote:
Have you got Xray of your chest?


Forgot to answer, they did not do an xray. Just EKG and normal blood work up. All ok.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Yuliasir on March 12th, 2014, 4:34 am

Xina, coughing has nothing with bulbar onset. People with bulbar disfunction choke with liquids and food consistently up to complete inablity to eat and keep saliva in the mouth, which is a bit different from dry cough :)))

Well, since you anyway had blood test for inflammation (RBC sedimentation rate is an indication of inflammatory disorders in the body), one can suppose you should not worry about TB. But if the cough will persist over 3 weeks, Xray really might be considered (especially if accompanied with subfebrile fever).

Dear Xina, I understand you so much.
most probably your leg pain is caused by nerve compression in the lumbar or piriformis region. nerve pain is one of the worse according to pain management booklets I translated. Believe me should the pain be from ALS spasticity, you would be clear,y unable to use your leg, had it crooked in quite specific position etc (which by the way could be also in case of mechanical failure becaus of muscle netion caused by nerve inflammation).

You know... I live in Ukraine. yes. in the country which is in a most serious crisis since the end of WWII. For several weeks I was barely able to work. Then by talking to my therapist and reading some good books about the value of suffering I managed to come closer to an idea that we, hypochondriacs, literally die before the death. Literally we kill ourselves out of the life when the life is still around us. In my imagination I went through all dreads of such crisis, I would not even name them. I was dead far before even the threat of death. I can not smile, eat, sleep, have sex etc.
I WAS DEAD.

I do not know what will happen to us in next few days or weeks. Have no idea really. but I decided to live, and moreover to survive whatever I could. Because the life comes out even from the slightest available piece, and people who survived nazi death camps could then again smile, couple, have childern, be happy. some of them. Some people survived even worse.

So, coming back to your fears, please please do not kill yoyurself with whatifs. You do not know, what if. You are not there yet. Most probbaly your EMG would be OK and will show mechanical trauma in your spine disks. Would you then regret about this premature dying? I am sure you would.

God bless us all
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby veryworried123 on March 12th, 2014, 8:56 am

extractable nuclear ab test is done after you have had a postive ana test

its much more specific and tests for a wider range

i hate to say google it but yes google it
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 12th, 2014, 10:14 pm

Very worried, yes, that is what happened. I had a positive ANA twice in lab work, one level. That's why I went to a rheumatologist who then took lots more blood to do the extractable and he checked for inflammation, cpk, and more. I will get a copy next week.

Yuliasir, you are very kind and shared lots of wonderful pieces of wisdom. It is very true that we are dead before we die. I am a perfect example of this right now. I am fighting. I think many people on here sees that happening with them as well. You are not just dealing with your personal struggles but also the fear, anxiety and uncertainty of what will be for the Ukraine, and still found a way to choose to live - this is very inspiring! I will keep you as a person in my thoughts, when I think of others who have 'survived' many terrible fates. I think of my own mother for example. She had stage 3 metastatic breast cancer, double mastectomy, 1 year of chemo treatment and lives today cancer free since 2005! She lives with many terrible side effects (she lots all her teeth during chemo, has severe neuropathy, fibromyalgia), on top of other common health issues like diabetes, high blood pressure, etc. With all of this, she also chooses to live. So not just her, but you, those in crisis everywhere, are in my thoughts when I need perspective and inspiration. In those moments, I feel small, like "what the hell am I afraid of, really?"....but it's a battle for sure! I so wish to be happy and smiley again, be less serious, etc. I keep telling myself "baby steps". This is a reference from one of my favorite movies called What About Bob with Bill Murray. I quote it all the time because Bob (Bill) is a hypochondriac and in therapy...it brings me some comic relief while I'm battling. I highly recommend all on here to watch it at least once!

And good news that those chest pains and the cough died down quite a bit! But I up at 3am again with this leg pain, on the couch bed so I won't disturb my husband, and excited to see the orthodox doc in 4 hours because I know I will walk out of there with less pain, but also dreading the news. Even my therapist (who I saw yesterday) says this will be a big day/moment for me. "Baby steps to 8 o'clock...baby steps to 8 o'clock..."
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 12th, 2014, 10:21 pm

*orthodox = orthopedic ...and to answer your question: yes I will hate myself for all of this life and time wasted. But somewhere I also believe that I am in this situation for a reason....to learn? To prepare and gain more strength for future scares? Don't know, but something positive has to come out if this, somehow...
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Yuliasir on March 12th, 2014, 11:37 pm

Thanks Xina,
yes by baby steps, yes and you know there is no small issue becasue well, to find survival idea in total crisis where ALL suffer is maybe about the same as to find a power to live when there is only your own total hell and nobody knows how deep it is.
hope your visit to orto would be a fruitful one.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 13th, 2014, 1:08 pm

Yuliasir wrote:Thanks Xina,
yes by baby steps, yes and you know there is no small issue becasue well, to find survival idea in total crisis where ALL suffer is maybe about the same as to find a power to live when there is only your own total hell and nobody knows how deep it is.


again, how right you are! :mrgreen:

So my appointment was mixed news.

No scan because first comes his exam and then he decides what scan to get, and then the scans have their own appointment schedule, so the next one is 9-Apr. EMGs are self pay (38€, not bad), but they have their own appt schedule too.

Based on the exam, he diagnosed me with this:

K29.5 Chronic gastritis, unspecified
M47.26 Other spondylosis with radiculopathy: lumbar
M51.1 Lumbar and other intervertebral disc disorders with radiculopathy

And shot me with lidocaine to first numb me, gave me more pain meds, but also a stomach protector now that I have developed gastritis due to ingesting so many pain pills. :(
In addition to the scan, he ordered physiotherapy, hydro jet massage, bandaging and interference therapie (something like an electric therapy like TENS).

He said all of what was happening to my leg is due to compressed/pinched nerves most likely coming from my lumbar back. He found a point on my lower left back that wasnt painful for me, but was sore when the right side felt normal, and that is where he shot me up.

I have less pain for sure, my left side feels numb in most places. The spots that hurt beyond belief are still there and are sore but not as throbbing, stabbing, spasming like before. I need to see how this shot helps me the next few days and go back on Monday to start the therapies and to maybe get another shot. Since the EMGs are self-pay I am going to ask if I can schedule one while I am there, because of my paranoid, 'what if...' brain. :oops:

He told me he felt bad that this was going on for so long and it got as bad as it did and I should have been referred to an orthopedic sooner. I am certainly frustrated about that as well, but I am relieved that I have less pain and he did not indicate anything about muscle disorder, besides that I am over-compensating on my left side, which is what the physiotherapy is supposed to help. Baby steps through this therapy and to 9-April!

Thanks to all who have helped me through this so far! I wish I could throw a party and invite you all!
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Yuliasir on March 14th, 2014, 12:54 am

I am so glad to see that i was right and it is a mechanic failure.
yes it may mean that you got physical damage which would cause you pain etc. for many months but anyway this is reversible to quite a degree.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby ShawnW on March 14th, 2014, 9:05 am

Believe it or not this could be good news for you. How many people here don't have a known medical cause for their symptoms? ANA is in no way associated with the really bad stuff. You probably have an autoimmune component to all your symptoms, which means it would likely respond to treatment. That means you would have an answer, and treatment...and even if you have something...you don't have the really bad something.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 15th, 2014, 6:14 am

Thank you Shawn and Yuliasir.

It definitely was a monumental appointment for me. I feel I am in a turning phase of my entire treatment, anxiety...all of it. Not yet found a path of direction, I feel I am at the roundabout, circling around, and I THINK I will be turning at a certain exit (a positive path), but I'm still circling.

My stupid problem now is that although I am starting to believe (not just think, but also 'feel' - so this is positive) that I do not have the terrible stuff, I can't trust everything. I have this gray cloud still sitting in my soul, because he can tell me all what he 'thinks' I have, but I want to know concretely what the scan/s says/say. That/they can't lie.

Like in my lumbar back, I have spondylosis? How can he know that without a scan? Why are the weird things going on in my hands and arms (dexterity, which still comes and goes) - do I also have spondylosis of my cervical spine or something else up there or something degenerative of my spine in general, maybe bone issues? :?:

Part of me is like, "Ugh, I am relieved, less pain, on my way to healing (hopefully), just have a mechanical problem (hopefully) so shut up about everything else! So many people have it worse, think of those who do really have the terrible stuff or don't have any clue what is happening..."
But the other part is like, "Something else is still creeping around, not sure, but this isn't over yet..."

I think it's partly the anxiety in general (which is still going to take therapy) and also partly mixed with feelings that I just can't trust doctors 'just like that'. I've been sent from one to the other: neuro gave me a nerve test of my hands but ignored my leg issue and didn't test there because she said it was somatic, my previous primary care doctor wanted to send me to a psychosomatic clinic because I told her I had burning pain in my legs (in OCT!) and she didn't even examine/look at my legs one time....then the orthopedic tells me I should have seen him a long time ago and the reason my condition is this bad is because the nerves were compressed for so long (and I am supposed to just believe him?). So I feel like I've been majorly written off (things were blamed on my anxiety issue), not taken seriously enough and I guess only more time and experience will help me here. Maybe others on here feel the same way? But mostly, I've read that the neuro or doctor, "gave me the test just to humor me and to calm me down", so they were atleast not written off, they were respected! I am not sure if I am expressing this correctly...

For now, I am going to try to stay in the positive part of my brain. We are going to a birthday party tonight, 1980s themed. Very excited about it, my leg is still painful but tolerable, my costume is "totally rad", so I am looking to have some fun (finally)!! Haven't felt this in such a long time! :mrgreen:

Well wishes for all!!
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby keomagnes on March 21st, 2014, 7:46 pm

Hello Xina535!

I was wondering if your compressed/pinched nerves have anything to do with your BFS. I mean, do you think you developed that because of the twitching or it was something else? Does your leg feel better now?!

One more last question, when did you start feeling pain in your leg (before or after the twitching started)?! Do you have any other kind of pain in your body?!

Hope you enjoyed the party with your family!!! :D
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 22nd, 2014, 4:27 am

Hi Keomagnes,
Good questions- first I am not yet 100% sure that I have pinched nerves. That is the ortho's opinion until I have my scan done to confirm. I def plan on posting on here once that's known. If I do have pinched nerves, then I would not know how or why, hopefully the scan will say.

If pinched nerves, then I would probably have twitching, yes, but then also pain, weakness, numbness all over my body, all the time (since I twitch all over my body, all the time). I get face twitches, without any other symptoms, so I don't think that is from pinched nerves. It makes sense if I have lumbar pinched nerves since I have pain, spasms, hardended muscles in my left leg.

My leg is more stable now, since the shot and some massage and electric stim therapies. Thanks for asking! I did have a good time at the party, it was much needed!

I started twitching in July and my left leg burning started in Oct. I get pain in my arms with weakness but my psychotherapist helped me realize this week that it is most likely Myofascial Pain Syndrome. The description of that matches my arm symptoms to the T. However, it could be pinched nerves too, if I have cervical spondylosis or similar to what is happening in my lumbar region.

Personally, I am beginning to believe my BFS is not **S, and it's from anxiety/tension/nervous system imbalance (sympathic vs. parasympathic). I am also hanging on to the belief that a series of bladder infections I had in the first half of 2013 where I was taking so many antibiotics, including Cipro, especially after I read more about what Cipro can do to nerves. I literally had the worst twitching episodes, to the point of full body convulsions with burning pain the week I took Cipro, and it died down a few days after my last pill (and my very last, I will never take it again!). So I personally think those things or a combo is my BFS cause. I still have the gray cloud like I mentioned before.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby keomagnes on March 23rd, 2014, 12:57 pm

Hey Xina535!

I'm glad to hear back from you! It's also nice to know that your pain symptoms are getting better! I would love to know the results of your scan and I hope there are some good treatments to whatever your problems is. I actually plan to start doing acupuncture sessions. Have you already thought about it?!

The most difficult part of being diagnosed with BFS is that we never know what caused it or what it can cause to your body. So if any new symptoms appear, we will never know for sure if it's related to BFS or something else.

I'm actually not worried about having **S or any other disease. I spent so much time worrying about diseases I didn't have that I decided to enjoy my life and not to think about all this stuff (easier said than done, I know). To be honest the only thing that scares me, it's the 'muscular pain' and 'fatigue' I may get with BFS. I can handle the twitches but muscular pain/fatigue would definitely change my quality of life (if you know what I mean).

I will start some acupuncture and meditation sessions to try to control my anxiety but I don't see myself going gluten free ever in my life (I think I wouldn't be able to do that). I would like to know what kind of changes did you do in your life to try to stop the twitches since it started.

Wish you a good day!
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 24th, 2014, 8:00 am

My leg pain has been more stable, though the twitching is constant and there are still sore spots.

Since the day before yesterday, I have been dealing with lots of arm pain, both arms. The most pain they've been in and they have been feeling weak. This is throwing me in circles again. Where did this come from? I didnt work out, but it feels like I had a heavy workout. My muscles are just really sore, like as if they were bruised. There are not any 'one' points and I do not feel any particular knots, so can this really be myofascial/trigger point stuff? Confused and scared again. :cry:

My husband gave me a massage yesterday and my neck and middle of my back were very sore also. He could barely put any pressure on them. I went in for a hydro-jet massage today (part of my therapy) and afterwards, my back felt like jelly, but I still have the pain. I found out today that my scan scheduled for April 9 is just for lumbar region, so I hope I can somehow get a full spine check up (thoracic and cervical).

I have done acupunture, yes. It helped before, but it seems it was temporary.

I also spent lots of money on hypnosis. I think that is the only method so far that has been able to get me to relax the most, deep down. When I had a series of sessions, it seems like that was the only time where my twitches died way down, to about the rate of a 'normal' person. I tried self-hypnosis/meditation, with some results but not enough it seems. I have also tried progressive muscle relaxation, this helps too, but I learned (with help of my psychotherapist) that you can't use anger and force and be too violent when you do it ("C'MON MUSCLES, RELAX!! I NEED YOU TO RELAXXX!!!"), becuase that has caused even more pain. My therapist advised that I stop doing that (for now). And yea, therapy and anti-anxiety meds, doing that now (since August).

THIS:
"The most difficult part of being diagnosed with BFS is that we never know what caused it or what it can cause to your body. So if any new symptoms appear, we will never know for sure if it's related to BFS or something else."

is very true. This is what all of our posts are related to. I consider it a personal hell. :twisted:
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Amylou29 on March 26th, 2014, 3:51 pm

Hi xina, just to say I have really similar symptoms to you re pain. I can how ever pin point mine to specific areas/limbs. I have a dent just above my left knee ( inner thigh ) and my whole thigh hurts, I also have a very sore right bicep for no reason what so ever, it takes very little exercise and my muscles feel like I have worked out for hours!
From what I understand this is quite common from bfs and I keep telling myself if it was the thing we're most scared of then surely my calf/ feet would have atrophied first? Who knows, I can safely say you're not alone. X
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

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