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Discussion Starter · #1 ·
I want to give some background. I am 34 yo female. I was diagnosed with vitiligo (another autoimmune disease) when I was 10yo but it was treated with creams and I responded very well. In my 20's I would get numerous rashes and also had extreme joint and muscle pain to the point I couldn't lift my arms when I got up in the morning. I was tested several times for Lupus (I think they just did ESR and ANA tests--both negative). I had an occasion where I had a butterfly rash on my face and one doctor thought it could be lupus but another doctor said no. I also had an one occasion after being in the sun where I came in from laying out and I had like 3 round circular rashes on my stomach...a day later I got flu like symptoms, and then a ton of mouth sores (I was very sick). Through the years I have noticed times where the pain was bad and other times where none at all. I have an aunt who died years ago from Lupus on my Dad's side. Now on my Mom's side my grandmother and great-grandmother both died from cirrhosis and never drank. No one ever knew why they got cirrhosis. Through my 20's I was a heavy drinker but have since cut way back. Flash forward...I got pregnant a couple of years ago thanks to fertility treatment. While pregnant I developed preeclampsia and had elevated LFT's throughout the remainder of pregnancy. My son was born premature. I have read that lupus often flares during a pregnancy. After having my son, my LFT's returned to normal. I began having the joint pain again though this time mainly in my fingers and wrists (very severe in the mornings) and also began to have extremely dry mouth (my tongue would stick to the side of my mouth during the night) and nose sores about once every couple of weeks. Slowly that has improved. I have also had on and off again right upper quandrant pain and back pain. You are probably asking why I didn't go to the doctor?? I guess I was afraid. I finally went. My LFT's were elevated 2x normal, ultrasound revealed slightly enlarged liver and spleen (with some fatty deposits on liver), and an AMA of 1:2560 (my doctor said the highest he has ever seen). AMA is antimitochondral antibody specific for primary biliary cirrhosis (another autoimmune disorder) but I was told could be elevated in SLE as well. And the dr. said it was homogeneous (not really sure the significance??) I am waiting on seeing a rheumatologist. In the meantime, here are my questions:

1) Has anyone on here been tested for AMA (not ANA) and got positive result?

2) Could it possibly be lupus since I have dealt with joint pain and other symptoms? The AMA test more points to the primary biliary cirrhosis (and it is possible especially with my grandmother and great grandmother having it for no obvious reason) but I just think I have so many other symptoms of lupus.

3) What tests should I expect to be done?

4) Lastly, I am currently undergoing infertility treatment again. I read that infertility treatment could definitely could trigger a flare of lupus. Anyone have any info on this?
If you made it all the way through I really appreciate it. I am so nervous right now and very scared. Thanks for any info you can give me.
 

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Hi & welcome,
A very good web site for lab tests
labtestsonline.org. ( i think, reply if you can't find it )
Sorry to hear your not feeling very good,
Take pic's of any rashes & write down what is wrong with you, even if you think it is trivial.
Big hugs
Sand.
 

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Discussion Starter · #3 ·
Thanks for the response. I wrote down all of my history last night and think I covered everything, even stuff that might not even be related. My primary doctor said I definitely have something autoimmune going on but now I just have to get a diagnosis (not sure if lupus is it). It is very strange. I am very emotional at the thought of finally getting a diagnosis (almost a relieved feeling). I haven't known what was wrong with me for all these years. I used to cry in the mornings when my joint pain was so bad and I didn't know what was wrong. I knew something was going on...but was so frustrating to not know what. Well, thanks again.
 

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Hi and welcome to the site. I hope that your doc manages to get to the bottom of your symptoms so that you can be treated accordingly. The uncertainty before diagnosis is a very difficult time, keeping a diary of symptoms can be very beneficial.

I hope that you feel better soon.

Take care

Deb
 

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Hello and :welcome:

I'm sorry to hear that you have been so unwell.

Many of your symptoms could fit lupus however, as you know, many AI diseases share some similar symptoms and lupus itself is known to be the "great imitator" which is why it is often such a complex disease to diagnose and treat.

Personally I have never heard of anyone here with high AMA as opposed to high ANA but, of course, I haven't heard of everything :)

This link will take you to a list of classification criteria for lupus (you may well have seen it before...) which might help you to see if there are things that fit that you may not have thought of as symptoms.

http://www.thelupussite.com/forum/showthread.php?t=33123

It sounds like you have a good doctor on board who is looking into things thoroughly. You don't mention if he is a rheumatologist? If not and he can't find out what's going on, I can only strongly suggest that you get a referral to an AI specialised rheumatologist. Not all rheumies are experienced with lupus and similar diseases.

Hopefully your current doc will get to the bottom of this quickly for you and that you can start some treatment.

bye for now,
Katharine
 

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Discussion Starter · #6 ·
Thanks again everyone for the warm welcome. My ANA hasn't been tested in about 5 years (at that time it was negative). My current doctor is just my primary doctor but I have a referral to see a rheumatologist. I am assuming he will probably do a lot of bloodwork including ANA..am I right to expect that? I understand from what I have read online that AMA is specific for primary biliary cirrhosis but have found it can also be elevated in SLE that is why I came to this site. I am thinking though since it is soooo highly elevated the signs are pointing more toward PBC. I have also found that sjogren's syndrome is often found along with PBC and I started having extreme dry mouth about a year ago (my tongue would literally stick to the sides and roof of my mouth when I was sleeping). The more research I do on sjogren's, it says you can also have joint pain with that. Ughhh, very frustrating. So many symptoms overlap. I guess there will be specific blood tests that will help them figure out what it is?? I currently am on a cancellation list to get into the rheumatologist otherwise my appointment is in 2 months. I think I might lose my mind by then. Thanks again.
 

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Hello again :)

It's great that you have already been referred to a rheumy eve if it sounds like you have a great primary doc :)

Yes the rheumy will want to run ANA and a battery of others which are more specific. 5 years is a very long time between ANA tests.

It is indeed very frustrating with so many overlaps in diseases but it sounds like your well on your way to answers.

Keep us posted on what happens...

Katharine
 

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This link may be of interest as well:

http://en.wikipedia.org/wiki/Anti-mitochondrial_antibody

Usually the information is accurate on wikipedia. I found it interesting that it states that anti-cardiolipin antibody is also an auto-antibody to part of the mitochondria. Never knew that before.

It can be hard to get a cancellation appt long enough for a first time visit as they do spend about 2-3 times as much time with you on a first appointment compared to follow up appointments so as to take a very thorough medical and family history, as well as a physical exam. You will get a lot more blood tests at your rheumy appointment (many have reported 8+ vials of blood taken so almost too many to list!), and probably a urinalysis as well. You may get a lip biopsy scheduled too if Sjorgen's is also a strong possibility (which it is based on what I know). You can have lupus and Sjorgens and autoimmune liver disease... where there is one autoimmune disease there is a much greater likelihood of more (unfortunately!).

You've done all that you can do... so stay hopeful that perhaps you can get in earlier... but you've lived with this for a long time so hopefully 2 more months won't make too much of a difference if you have to wait for your scheduled appointment.

You may want to postpone the fertility treatment, unless you're right in the middle of it. If you are feeling very ill, that is *not* the time to get pregnant. Assuming you have an autoimmune disease, it really should be under control/in remission before you get pregnant. Not sure if it will trigger worsening symptoms or not... just know doctors advise not getting pregnant when flaring.
 

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I can't say that I have had an AMA test but most of my blood work is fine for the most part it is the biopsies that tell all for me. I did read the post top to bottom and wanted to say that I hope that you are feeling a little better today and that I hope You find out what is going on with you soon so treatment can begin.

I would share the information about the lupus on your dad's side of the family with the rhuemy and the other family history for a full and complete family history. It also might help him to figure out just what is going on and what kind of tests to run for proof. I wish you the best and hope to see you next time with good news.
 

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Discussion Starter · #10 ·
This was our last planned cycle with fertility treatment before taking a break and re-evaluating. I didn't start feeling bad and didn't get positive AMA test until after it was done. So now I am in the two week wait. At this point I honestly am not even thinking about getting pregnant, which is crazy because it has totally consumed me the last few months. I am a little afraid if I do end up pregnant this month how it will all turn out.

One other thing I think I failed to mention. I am not even sure if it is all related to the positive AMA and elevated LFT's,etc. I felt a lump near my right ribcage. When they did the u/s of my liver they said it was not my liver but a little "mixed mass" is what they called it. My doctor said it could be a cyst or maybe a hernia. He prescribed antibiotics in case it was an infected cyst or abcess and said if it didn't go away I would need to see a surgeon for a biopsy or removal. He said there was some bloodflow to it, which sort of alarmed me because I didn't think there would be bloodflow to a cyst. Anyone know if cysts are common in autoimmune disorders? I am worried because in researching sjogren's..it says that lymphoma is sometimes associated. Not sure if lymphoma would present itself in that location but it still has me freaked out a bit. Antibiotics don't seem to be helping so I will call surgeon Monday. Thanks again for the support!
 

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Hi Liza,

Welcome to the site.

You have quite an assortment of symptoms. I suggest for the time being you stop searching the internet as you seem to be scaring yourself with all the various possibilities. Between now and your rheumy appointment make a list of all the symptoms you have no matter how small.

Ask any questions you have, we are more than willing to help if we can.

Take care,
Lazylegs
 

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Discussion Starter · #12 ·
Lazylegs- You are right. I am going to give the internet a break. I have today off and I am going to try and enjoy the day with my husband and son and keep my mind off things. I hope the lump is just a coincidental finding that is nothing serious. I will call surgeon on Monday to schedule biopsy/removal. I will just be happy when I know what I am dealing with...I think it is the unknown that is so hard.

Hope everyone has a good weekend.
 
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