Aa
Well well there was a surprise......at the doctors today
I went to the GP about my hearing and the test results of my fasting sugar test.
Good news is my sugar is normal.
Then she said oh there is a letter from the neurologist and apparently you have a positive blood test come back.....Now I cant remember having a blood test with him for ages????
The test that is positive is:
Anti Smooth Muscle Autoantibody
anti-nuclear factor
antimitochondrial antibody
parietal cells
reticulin R1 Autoantibody
So that was a bit of a shock, SOMETHING POSITIVE..... She said this test is usually seem in liver problems but my blood tests show a good liver, and then she said that the neuro is now trying to get me to see a rheumatologist.......
When I checked on the old google the above shows up for LUPUS, well well well.
Has anyone got any other ideas, and should I be worried lol.
But it shows I have an autoimmune problem going on..........
Good news is my sugar is normal.
Then she said oh there is a letter from the neurologist and apparently you have a positive blood test come back.....Now I cant remember having a blood test with him for ages????
The test that is positive is:
Anti Smooth Muscle Autoantibody
anti-nuclear factor
antimitochondrial antibody
parietal cells
reticulin R1 Autoantibody
So that was a bit of a shock, SOMETHING POSITIVE..... She said this test is usually seem in liver problems but my blood tests show a good liver, and then she said that the neuro is now trying to get me to see a rheumatologist.......
When I checked on the old google the above shows up for LUPUS, well well well.
Has anyone got any other ideas, and should I be worried lol.
But it shows I have an autoimmune problem going on..........
Hey Mrs A,
Yes, I am actually currently having it retested so will be interesting to see what happens there, especially as on a recent examination the doc told me she could feel my liver....!
But like you, my liver tests have always been normal - I don't look jaundiced or anything like that either.
Keep us updated, I'll post if anything crops up.
Cindy.x
Yes, I am actually currently having it retested so will be interesting to see what happens there, especially as on a recent examination the doc told me she could feel my liver....!
But like you, my liver tests have always been normal - I don't look jaundiced or anything like that either.
Keep us updated, I'll post if anything crops up.
Cindy.x
Thanks for the good luck I need it.
From what my doctor said it was a good firm positive but they wernt so worried as my liver functions were good. I think if my liver had been poor then there would have been a lot to worry about as ASMA is indicative of autoimmune hepatitis so thats some thing hopefully i dont need to worry about. I think if any result is mildly positive it shows something is going on and surely a mildly can change cant it, have you been retested.
Goodness they give us these tests then poo poo the findings its mad innit. xxxx
From what my doctor said it was a good firm positive but they wernt so worried as my liver functions were good. I think if my liver had been poor then there would have been a lot to worry about as ASMA is indicative of autoimmune hepatitis so thats some thing hopefully i dont need to worry about. I think if any result is mildly positive it shows something is going on and surely a mildly can change cant it, have you been retested.
Goodness they give us these tests then poo poo the findings its mad innit. xxxx
Mrs A,
Just seen this post - big news! I sort of feel like I should be congratulating you but of course it's not exactly a happy occassion is it!
But even so, a step forward is a step in the right direction.
Please also get the doc to test you for thyroid antibodies when you go to your private clinic, make sure all the bases are covered.
I've had a very, very mildly positive ASMA too, told it wasn't nothing at all to worry about so will be interested to see what they tell you on that.
If you have coeliac and pernicious anaemia then it's no blimmin' wonder you feel so rough!
If I were you I would insist on having your girls tested too, as it's usually hereditary.
Good luck! x
Just seen this post - big news! I sort of feel like I should be congratulating you but of course it's not exactly a happy occassion is it!
But even so, a step forward is a step in the right direction.
Please also get the doc to test you for thyroid antibodies when you go to your private clinic, make sure all the bases are covered.
I've had a very, very mildly positive ASMA too, told it wasn't nothing at all to worry about so will be interested to see what they tell you on that.
If you have coeliac and pernicious anaemia then it's no blimmin' wonder you feel so rough!
If I were you I would insist on having your girls tested too, as it's usually hereditary.
Good luck! x
Oh my no we would not censor your posts lol. I have done that myself not so much on here but on facebook and for some reason dont ask I HAD 2 facebook windows opened one on top and it looked as though my post had not appeared on the wall. Then I found another window open logged out ... logged back in and I had posted twice lol.
Yes audrey I did write the exact same on the thread about Reumy (i cant spell that). I think I put another grrrrrrrr in there somewhere.
I am madder then a bee. IF they have caused me to become so ill because of refusing to see me they better watch out.
They should have seen me on my first ANA LUPUS positive.....
BUT I know what they will say that this is NEW a red herring or something they will get past it some how.
This positive though really makes sense to how I feel medically. I knew it was auto immune and inflammatory. I know my own body it has been through hell and back.
I had to fight to have a test on my gallbladder as they kept saying I was anxious emotional blah blah....until it got so bad I collapsed.....
My cyst on my ovary even though I was pregnant i could feel the CYST it was that big and told the doctor i was worried as I could feel a large lump......they ignored me .... then I was rushed into hospital in hong kong and they found a cyst bigger then a jaffa orange and it was on the verge of bursting.............thankfully i kept my baby.
my endometriosis and fibroids again I had to push and push about this. What is it with doctors and women, they just think we are all nuts or something.
IF they the doctors had to live in my shoes for 1 hour they would be crying...........
So its crunch time. I have decided to see a private clinic making the appointment on Monday. They specialise in MS and autoimmune diseases and I am going to have this thrashed out once and for all. I am not waiting for an appointment through our NHS. Time is just too important.
We dont know how long this ASMA has been in my blood do we................
mariax
Yes audrey I did write the exact same on the thread about Reumy (i cant spell that). I think I put another grrrrrrrr in there somewhere.
I am madder then a bee. IF they have caused me to become so ill because of refusing to see me they better watch out.
They should have seen me on my first ANA LUPUS positive.....
BUT I know what they will say that this is NEW a red herring or something they will get past it some how.
This positive though really makes sense to how I feel medically. I knew it was auto immune and inflammatory. I know my own body it has been through hell and back.
I had to fight to have a test on my gallbladder as they kept saying I was anxious emotional blah blah....until it got so bad I collapsed.....
My cyst on my ovary even though I was pregnant i could feel the CYST it was that big and told the doctor i was worried as I could feel a large lump......they ignored me .... then I was rushed into hospital in hong kong and they found a cyst bigger then a jaffa orange and it was on the verge of bursting.............thankfully i kept my baby.
my endometriosis and fibroids again I had to push and push about this. What is it with doctors and women, they just think we are all nuts or something.
IF they the doctors had to live in my shoes for 1 hour they would be crying...........
So its crunch time. I have decided to see a private clinic making the appointment on Monday. They specialise in MS and autoimmune diseases and I am going to have this thrashed out once and for all. I am not waiting for an appointment through our NHS. Time is just too important.
We dont know how long this ASMA has been in my blood do we................
mariax
Mrs. A:
I posted this morning ( I swear I did), but somehow it did not make it onto the forum??? Was I censored? Lost in cyberspace?
I know that a lot of things don't work quite the same with me any more, but not something like this.
Moving onto the topic at hand, is karma at work here? The oother day you posted about not being able to get in to see a rheumatologist without a referral and now it appears that your neuro will be making that recommendation.
I truly hope that this leads to an answer to all of the mysteries with which you have had to deal for too long.
I will keep my fingers, knees and toes crossed for you in the hopes that you get an answer soon.
Audrey
PS: If anyone finds my previous post floating out there in cyberspace, please return it to me just so I know that I have not lost my marbles.
I posted this morning ( I swear I did), but somehow it did not make it onto the forum??? Was I censored? Lost in cyberspace?
I know that a lot of things don't work quite the same with me any more, but not something like this.
Moving onto the topic at hand, is karma at work here? The oother day you posted about not being able to get in to see a rheumatologist without a referral and now it appears that your neuro will be making that recommendation.
I truly hope that this leads to an answer to all of the mysteries with which you have had to deal for too long.
I will keep my fingers, knees and toes crossed for you in the hopes that you get an answer soon.
Audrey
PS: If anyone finds my previous post floating out there in cyberspace, please return it to me just so I know that I have not lost my marbles.
it's good to hear that you're "moving on" in the diagnostic process. i'll be holding thumbs that it all goes well
take care
take care
Hello
Well something positive for a change, lets hope now you can get answers and treatment to help you feel better.
Thinking about you and I'll keep my fingers crossed that this is a step in the right direction for you after all this time.
Take care
Suz
Well something positive for a change, lets hope now you can get answers and treatment to help you feel better.
Thinking about you and I'll keep my fingers crossed that this is a step in the right direction for you after all this time.
Take care
Suz
dear maria,
this is all incredibly promising from my vantage point. i am hanging on the edge of my seat...
with toes, fingers and eyes crossed for more concrete information coming your way,
xoxox
binx
this is all incredibly promising from my vantage point. i am hanging on the edge of my seat...
with toes, fingers and eyes crossed for more concrete information coming your way,
xoxox
binx
I think your first port off call now is the GP, for a referral, with a full copy off all the positive bloodtests, with none to be left out.... lol i say that as we all know how things go a miss when they want them too....
I asked about B12 because of the parietal cells, and we all know B12 deficiency, causes neuro, tingles, etc....
I have checked out the mitochondrial, and yes they are the anticardiolipin, etc which are seen in Hughes Syndrome which ive already mentioned.
Have you any numbers or pattern on the anti nuclear factor?
This is found in some auto-immune diseases, ie Lupus 95%, sjorgens, etc
The anti nuclear can also be positive with auto-immune hepatitis, but auto-immune hepatitis, can go along with other auto-immune illnesses.
So whatever there is a lot going on in my eyes.
Now the scratching of the legs, and the blood on the sheets, can be a sign off liver problems, but a full liver scan and evaluation needs carrying out also.
Have you ever acquirred your notes, maybe from the hospital were they did your surgery when you was 26. It might be worth a look, as anything taken away would have had to have a histology report.
I would definately get a referral to St Thomas,s. were they will sort you out in no time, and were they will test you for the whole lock stock and barrel, and not leave anything overturned.
I have known patients to be diagnosed with 4 different auto-immune diseases.
It will be worth the 2 hour drive, to your own general health.
I also think that auto-immune hepatitis, can be a complication of Lupus.
When you say your feet are sore what do you mean, ? do they swell? do they burn? do they itch? do they change colour? or do the bones hurt?
I would like to know more please.
Have you ever been tested for Mixed connective tissue disease?
It sounds to me like you have a few things going on here.
This could be Lupus, along with Hughes being secondary.
Also there is a liver problem you can get with Hughes called the Budd- Chiari.
and as we know Lupus can affect the liver, but so can sjorgens, and others , so thats why i recommend someone good to put all your jigsaw pieces together.
Good luck Maria, i really hope finally you will get some answers, and also get a full copy for your own records of your blood results of your GP.
Please keep me posted
Nicola.xxx
I asked about B12 because of the parietal cells, and we all know B12 deficiency, causes neuro, tingles, etc....
I have checked out the mitochondrial, and yes they are the anticardiolipin, etc which are seen in Hughes Syndrome which ive already mentioned.
Have you any numbers or pattern on the anti nuclear factor?
This is found in some auto-immune diseases, ie Lupus 95%, sjorgens, etc
The anti nuclear can also be positive with auto-immune hepatitis, but auto-immune hepatitis, can go along with other auto-immune illnesses.
So whatever there is a lot going on in my eyes.
Now the scratching of the legs, and the blood on the sheets, can be a sign off liver problems, but a full liver scan and evaluation needs carrying out also.
Have you ever acquirred your notes, maybe from the hospital were they did your surgery when you was 26. It might be worth a look, as anything taken away would have had to have a histology report.
I would definately get a referral to St Thomas,s. were they will sort you out in no time, and were they will test you for the whole lock stock and barrel, and not leave anything overturned.
I have known patients to be diagnosed with 4 different auto-immune diseases.
It will be worth the 2 hour drive, to your own general health.
I also think that auto-immune hepatitis, can be a complication of Lupus.
When you say your feet are sore what do you mean, ? do they swell? do they burn? do they itch? do they change colour? or do the bones hurt?
I would like to know more please.
Have you ever been tested for Mixed connective tissue disease?
It sounds to me like you have a few things going on here.
This could be Lupus, along with Hughes being secondary.
Also there is a liver problem you can get with Hughes called the Budd- Chiari.
and as we know Lupus can affect the liver, but so can sjorgens, and others , so thats why i recommend someone good to put all your jigsaw pieces together.
Good luck Maria, i really hope finally you will get some answers, and also get a full copy for your own records of your blood results of your GP.
Please keep me posted
Nicola.xxx
Hi Nicola I am in gloucestershire which is only about 2 hours from London.
I am kind of excited and scared at the same time.
I think on reflection when the district nurse did my bloods 2 weeks ago they must have done these tests as she took loads of vials off me. Perhaps they were just covering all the aces as I have gotten so sick of late.
Yes I do have gastric problems especially at night and I do feel nauseated. I had a full cholecystectomy when I was 26 and after the operation I was very very sick and in intensive care for a week. I had a weird experience there as when I woke up on one of my rare occasions I remember two nurses saying close to me is she the one where they found cancer. Now I know I did not dream this, because the nurse noticed I was awake and quickly shuffled away. I asked my hubby if everything was ok and he said yes but it was strange as my parents arrived and stayed for 3 days....I know i know you can easily put things together to make 53, but it was really strange at the time. I was one sick puppy I know that......I am wondering ...... if something is going on again perhaps... who knows....I do have pain in my liver but my GP says it is nerves.........BUT then today she said my bloods were good for liver etc... so i think i am just seeing things that arnt there ......
I am feeling worse though and I have noted in the morning now blood on my sheets were I a am scratching myself on my legs at night....
Anyway I am going to see the GP about a referal.
At least I know we are on the right track and it is auto immune..... and inflammatory.
Oh I found out that the last one reticulin R1 Autoantibody is what they look for in Cealiac lol so it gets curious and the parietal cells in pernicous anemia..Now I am sure my B12 is ok but on reading about PA it doesnt mean a thing you can still have high levels of B12 but have PA....another thing is my dad had low B12.....
Its a curious mixture is it not......
Probably nothing much to worry about. I dont get it though perhaps you can explain. My doctor said ASMA IS AN autoimmune response and basically my good cells are attacking my muscles so is that why I have so much pain especially in my leg and feet or am I missing the point?
Mariaxxx
I am kind of excited and scared at the same time.
I think on reflection when the district nurse did my bloods 2 weeks ago they must have done these tests as she took loads of vials off me. Perhaps they were just covering all the aces as I have gotten so sick of late.
Yes I do have gastric problems especially at night and I do feel nauseated. I had a full cholecystectomy when I was 26 and after the operation I was very very sick and in intensive care for a week. I had a weird experience there as when I woke up on one of my rare occasions I remember two nurses saying close to me is she the one where they found cancer. Now I know I did not dream this, because the nurse noticed I was awake and quickly shuffled away. I asked my hubby if everything was ok and he said yes but it was strange as my parents arrived and stayed for 3 days....I know i know you can easily put things together to make 53, but it was really strange at the time. I was one sick puppy I know that......I am wondering ...... if something is going on again perhaps... who knows....I do have pain in my liver but my GP says it is nerves.........BUT then today she said my bloods were good for liver etc... so i think i am just seeing things that arnt there ......
I am feeling worse though and I have noted in the morning now blood on my sheets were I a am scratching myself on my legs at night....
Anyway I am going to see the GP about a referal.
At least I know we are on the right track and it is auto immune..... and inflammatory.
Oh I found out that the last one reticulin R1 Autoantibody is what they look for in Cealiac lol so it gets curious and the parietal cells in pernicous anemia..Now I am sure my B12 is ok but on reading about PA it doesnt mean a thing you can still have high levels of B12 but have PA....another thing is my dad had low B12.....
Its a curious mixture is it not......
Probably nothing much to worry about. I dont get it though perhaps you can explain. My doctor said ASMA IS AN autoimmune response and basically my good cells are attacking my muscles so is that why I have so much pain especially in my leg and feet or am I missing the point?
Mariaxxx
Thankyou for messaging me.
Firstly you need to find out from what date the bloodtests were done? All bloodtests have to be dated, from the findings.
The antibodies what have tested positive can be found in Lupus, along with other auto-immune diseases, and there are over 80. lol
But with Lupus the immune system goes into overdrive, and hence you end up with multiple auto-antibodies.
I am almost positive also that antimicochondrial antibodies, are connected to anticardiolipin, and the lupus anticoagulant, which i had previously posted about the diagnosis for Hughes Syndrome.
So being positive on the mitochondrial, i would definately be asking for the anticardiolipin, and the Lupus coagulant to be done.
Remember that Hughes Syndrome, can go alongside Lupus, the main one, and a few other auto-immune diseases.
So you end up with a couple of auto-immune diseases.
Hughes syndrome can either be Primary or Secondary, to another cause.
Can i ask have you had your B12 tested?
Also have you had a liver scan,? and do you suffer with gastric problems also?
I dont know were you are situated in the UK?
But due to your many problems and symptoms, you need to be finding a very good rheumatologist.
My advice to you, is to get your GP, to refer you to the Louise Coote. Lupus Clinic. ay St Thomas,s Hospital , London.
The rheumatologist there are the best in Europe, and they come from all over the country to get seen and treated there.
It is the centre were Hughes Syndrome was found on Lupus patients in 1983.
PS. One third off Hughes Sufferers there have all had a MS diagnosis mooted.
If i can be off anymore help, let me know.
Right now i have my fingers crossed , that you are one step further to a PROPER, diagnosis.
Nicola.xxx
Firstly you need to find out from what date the bloodtests were done? All bloodtests have to be dated, from the findings.
The antibodies what have tested positive can be found in Lupus, along with other auto-immune diseases, and there are over 80. lol
But with Lupus the immune system goes into overdrive, and hence you end up with multiple auto-antibodies.
I am almost positive also that antimicochondrial antibodies, are connected to anticardiolipin, and the lupus anticoagulant, which i had previously posted about the diagnosis for Hughes Syndrome.
So being positive on the mitochondrial, i would definately be asking for the anticardiolipin, and the Lupus coagulant to be done.
Remember that Hughes Syndrome, can go alongside Lupus, the main one, and a few other auto-immune diseases.
So you end up with a couple of auto-immune diseases.
Hughes syndrome can either be Primary or Secondary, to another cause.
Can i ask have you had your B12 tested?
Also have you had a liver scan,? and do you suffer with gastric problems also?
I dont know were you are situated in the UK?
But due to your many problems and symptoms, you need to be finding a very good rheumatologist.
My advice to you, is to get your GP, to refer you to the Louise Coote. Lupus Clinic. ay St Thomas,s Hospital , London.
The rheumatologist there are the best in Europe, and they come from all over the country to get seen and treated there.
It is the centre were Hughes Syndrome was found on Lupus patients in 1983.
PS. One third off Hughes Sufferers there have all had a MS diagnosis mooted.
If i can be off anymore help, let me know.
Right now i have my fingers crossed , that you are one step further to a PROPER, diagnosis.
Nicola.xxx
Hi jibs oh about the cancer marker perhaps i got that wrong, it was just someone told me that a positive ASMA can be indicative of a tumour somewhere too.
This nausea I have that at times it drives me mad. I sip coke. I get it when I am really fatiqued its horrible and I truly feel for you.
Now just you rest ok, dont be doing so much.xxx
This nausea I have that at times it drives me mad. I sip coke. I get it when I am really fatiqued its horrible and I truly feel for you.
Now just you rest ok, dont be doing so much.xxx
Oh...I did not know it could be a cancer marker.....Geez...Are they looking at your blood way back when????? How can that be accurate, any talk of a redo?
I'm okay...still neauseated but it is not as constant as it had been... I have been poppingpills left and right like doc suggested but it is not going away..don't think it is ALLLLL related to migraines....
Jibs
I'm okay...still neauseated but it is not as constant as it had been... I have been poppingpills left and right like doc suggested but it is not going away..don't think it is ALLLLL related to migraines....
Jibs
I am stunned. I had a blood test 2 weeks ago for blood sugar I thought. Now when I saw the doctor she came up with this she said it was from my neurologist Jibs but I havent had bloods with him for ages so just dont know. I wonder if it is a result that was lost or missed, OR the blood tests I had recently maybe they asked for this testing. Strange I just dont know.
ITS shook me a bit as it could be a cancer marker too which is a worry.....
BUT I really shows I have autoimmune problems, and perhaps this smooth muscle could be why I am in pain with my feet who knows.
I have never heard of it lol.....
How are you today? Mariaxx
ITS shook me a bit as it could be a cancer marker too which is a worry.....
BUT I really shows I have autoimmune problems, and perhaps this smooth muscle could be why I am in pain with my feet who knows.
I have never heard of it lol.....
How are you today? Mariaxx
WOW..This is a huge step for you.....how come this never came up in the past????I mean wouldn't your doc have told you if this was the case.
Jibs
Jibs
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