Discussions By Condition: I cannot get a diagnosis.

Sjogrens Syndrome??/aps (antiphospholipid Syndrome)??/fibromyalgia??/endometriosis??

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: Anonymous
  • July 18, 2007
  • 01:08 AM

SORRY SO LONG BUT I HAVE NO ONE TO TALK TO!!! NO ONE REALLY EVER WANTS TO LISTEN.....ESPECIALLY THE DOCTORS (DON'T KNOW WHY BECAUSE THEY ARE SUPPOSED TO BE HERE TO HELP US)

Do you think these 2 are related?

The reason why I ask is:

I have been having horrible problems for years. Just had excision surgery for Endometriosis & of course my problems continued. I saw an Endocrinologist who referred me to a Rhuematologist (after getting a positive Antiparietel Cell Antibody). I saw one Rhuematologist which diagnosed me with Fibromyalgia. I went to another Rhuematologist who said it seems like I do have all the symptoms of Fibromylgia but then did even more blood tests just to make sure (I explained to her that I have also been having miscarriages along with all my MANY MANY other symptoms). She mentioned that she is checking every possible thing & mentioned doing the Antiphospholipid Antibody test for that too. Well, my test results came back & she said that I do not have Lupus. I questioned Sjogrens Syndrome (because my dad's father has it---they were only able to detect it from a lip biopsy) & my dad's brother just found out he had it & it is in remission). She said that I do not have Sjogrens syndrome (because all my blood tests came back fine---I guess the SSA, SSB & ANA----they were all negative). Now, isn't it true that all these tests can be negative & a person can still have secondary Sjogrens?? I really feel like I have Sjogrens but I am not getting the testing that I need. Also, my Rhuematologist advised me that the only test she was concerned about was my Anticardiolipin (which I believe is related to the Antiphospholipid antibody) antibody that came back positive. She advised me to be sure to take a baby aspirin every day & she will see me back in exactly 3 months to do that blood test again to see what is going on & then we will go from there. Of course my doctor did not explain very much to me about this, so I had to do much of my research on the internet.


I have not been taking the baby aspirin. I have actually been taking a BC powder every day due to the horrific headaches that I have been having.

Other symptoms:

Chest pain----sometimes pretty bad but I just ignore it---the other night I just woke up in the middle of the night with horrible palpitations (like my heart was going to come out of my chest---a very horrid feeling) along with profuse sweating & episode of where I felt like I could not breathe along with nausea. I have never have experienced this before. I had to just sit up in bed & try to remain calm & breathe in & out slowly until the episode let up. I was going to go to the ER but did not want to waste the money or time so never did f/u on it.

Dizziness

Horrible Horrible Fatigue (I barely have enough energy for work). I have to basically do nothing at home so I have enough energy for work.

Irritability

Extreme Dry Eye (I have had since was 19 & I am now 33)---I have used many over the counter eye drops & night time eye salves over the years (of course none really help completely). There are times that my eyes feel like they are sticking to my eyelid. It is not a very nice feeling. I can't even wear contacts. Have tried contacts several times (even the newer varieties) but they always stick to my eyes & eyelids.

Dryer & Dryer skin as the years go by (I start to look older & older). I used to have extremely oily beautiful skin---now I look so old.

Chronic Urinary problems (with fine cultures). One surgeon told me I had interstitial cystitis but don't know. Try to resort not going to the doctor too much because I don't like to take much antibiotics.

Chronic gastrointestinal problems lately I am having clayish colored stools.

Chronic dry cough all the time

I have episodes at night where I have to get up & drink lots of water due to cotton mouth---I had an episode about a month ago where I got cotton mouth so bad at work that it felt like my throat was closing shut. I ended up going to a clinic & gave me a shot of a steroid & I was fine the next day.

I have episodes that when I stand too long my toes begin to feel funny & they start to turn red as if my circulation has been cut off

Hot flushes---I get these all the time

Horrible Brain Fog---I feel like I am losing my mind at work

Aches & pains that I have all over my body

MANY MANY other problems

Is there a possibility that I may have been diagnosed with Fibromylgia in error. How do we know that something else may be causing all the symptoms of Fibromylgia such as Antiphospholipid Syndrome. How do I know that I do not have Sjogrens Syndrome (that is still undiagnosed due to not having the proper testing) that has led to me having Antiphospholipid Syndrome or vise versa?

I know I no longer have Endometriosis because I had excision surgery & it was all removed

Does anyone out there have any answers?

What doctor should I see next?


THANKS FOR LISTENING!!!!

Reply Flag this Discussion

17 Replies:

  • Were you tested for hypothyroidism? Your sx's sound like that and you could have the sx which goes with that, sleep apnea. That can cause the cotton mouth feeling you wrote about.Try reading on:http://thyroid.about.com/ and click on hypothyroidism.Then read on sleep apnea at:http://www.talkaboutsleep.com/The tests you would need are T4, T3, TSH, and Thyroid Antibodies. However, my endo told me some people don't have the thyroid antibodies after a while because they are burned off.Since your family or origin does already have some diseases which are autoimmune and therefore related to Hashimoto's Thyroiditis, the most common type of hypothyroidism, I would think that testing for this would be important.Symptoms of sleep apnea and hypothyroidism are similar but the chest pain is one more common to hypoT, as well as the dry skin, dry eyes, chronic GI problems, chronic urinary problems, brain fog, and aches and pains. The irritability, dry cough, dizziness, night sweats, brain fog, and aches and pains are common to both sleep apnea and hypoT.
    Anonymous 42789 Replies Flag this Response
  • What's a BC powder? How old are you?It takes a hardy soul to ignore symptoms of heart attack. Maybe you are having angina.
    rad-skw 1605 Replies Flag this Response
  • I think its very likely that you could have CFS from the symptoms you described., Fibromyalgia often goes hand in hand with this and CFS will make you get a ton more symptoms such as the ones you are having eg the heart palpitations, chest pain, hot flushes, thirst, dizziness (even the cough) etc etc (and suffer from more tiredness than just having fibro alone). Many doctors have no real experience in diagnosing this (and others dont even believe in it still!!).. so you may need to seek out a CFS specialist!!!. CFS causes many more symptoms then many are aware of. I dont know if this is relevent (Ive got mind fog right now due to CFS) but the majority of people with CFS are said to have Antiphospholipid Antibody Syndrome (APS).. or blood hypercoagulation. (Ive read in places that at least three quarters of ones one CFS have this issue happening.. and this is so in my case as well). Im assuming you got told to take baby asprin due to hypercoagulation defect. from http://www.hemex.com/publications/cfs_model.php http://www.dfwcfids.org/medical/blood.html "Studies show that between 79% and 92% of CFS and/or FMS patients have hypercoagulation defect." " Following is a list of the myriad symptoms seen in CFIDS, including a rough estimate of the percentage of patients who would have each symptom. Those symptoms that cause patients the greatest discomfort are asterisked (*). Fatigue or exhaustion95 %*Headache90 %*Malaise80 %*Short-term memory loss80 %*Muscle pain75 %*Difficulty concentrating70 %*Joint pain65 %*Depression65 %*Abdominal pain60 %*Lymph node pain50 %*Sore throat50 %*Lack of restful sleep90 %*Muscle weakness30 %Bitter or metallic taste25 %Balance disturbance30 %Diarrhea50 %Constipation40 %Bloating60 %Panic attacks30 %Eye pain30 %Scratchiness in eyes60 %Blurring of vision80 %Double vision10 %Sensitivity to bright lights80 %Numbness and/or tingling in extremities60 %Fainting spells40 %Light-headedness75 %Dizziness30 %Clumsiness30 %Insomnia65 %Fever or sensation of fever85 %Chills30 %Night sweats50 %Weight gain40 %Allergies60 %Chemical sensitivities25 %Palpitations55 %Shortness of breath30 %Flushing rash of the face and cheeks40 %Swelling of the extremities or eyelids20 %Burning on urination20 %Sexual dysfunction20 %Hair loss20 %"from http://www.co-cure.org/dbell_en.htm (there are also many other symptoms common in CFS, this list only lists the ones that at least 20% of ones with CFS or upwards get and some of the very common CFS symptoms eg thirst..aint on that list). I myself have 80 different symptoms with it.
    taniaaust1 2267 Replies Flag this Response
  • Were you tested for hypothyroidism? Your sx's sound like that and you could have the sx which goes with that, sleep apnea. That can cause the cotton mouth feeling you wrote about.Try reading on:http://thyroid.about.com/ and click on hypothyroidism.Then read on sleep apnea at:http://www.talkaboutsleep.com/The tests you would need are T4, T3, TSH, and Thyroid Antibodies. However, my endo told me some people don't have the thyroid antibodies after a while because they are burned off.Since your family or origin does already have some diseases which are autoimmune and therefore related to Hashimoto's Thyroiditis, the most common type of hypothyroidism, I would think that testing for this would be important.Symptoms of sleep apnea and hypothyroidism are similar but the chest pain is one more common to hypoT, as well as the dry skin, dry eyes, chronic GI problems, chronic urinary problems, brain fog, and aches and pains. The irritability, dry cough, dizziness, night sweats, brain fog, and aches and pains are common to both sleep apnea and hypoT.I have been to 2 Endocrinologists & both of them said I did not have a Thyroid problem. I did think at one time I had Hashimoto's Thyroiditis but all my tests came back negative (the T2, T4, TSH & Thyroid Antibody). Now there was one time my Cortisol was not right & the Endocrinologist had to retest & it was fine the next time so he said the test must have been wrong. There was also another time when my TSH was kinda low but the Endocrinologist acted like that was nothing either. He also did the ACTH testing too & everything turned out fine.
    Anonymous 42789 Replies Flag this Response
  • What's a BC powder? How old are you?It takes a hardy soul to ignore symptoms of heart attack. Maybe you are having angina. I guess you would say it is angina. For years I was diagnosed as having anxiety (& I also had a negative stress test in 2004 by a Cardiologist). However, after years & years of being on antidepressants & such (all the doctors were thinking all this was in my head) it did not help. I do know that stress makes my chest pain worse. Heat does too. And it sometimes gets worse when I sleep. It happens at any time of the day & sometimes all throughout the day. The thing that scared me the most was the fact that something like that would just wake me up in the middle of the night all of a sudden out of a deep sleep. I still really do not know what to think about that,
    Anonymous 42789 Replies Flag this Response
  • I think its very likely that you could have CFS from the symptoms you described., Fibromyalgia often goes hand in hand with this and CFS will make you get a ton more symptoms such as the ones you are having eg the heart palpitations, chest pain, hot flushes, thirst, dizziness (even the cough) etc etc (and suffer from more tiredness than just having fibro alone). Many doctors have no real experience in diagnosing this (and others dont even believe in it still!!).. so you may need to seek out a CFS specialist!!!. CFS causes many more symptoms then many are aware of. I dont know if this is relevent (Ive got mind fog right now due to CFS) but the majority of people with CFS are said to have Antiphospholipid Antibody Syndrome (APS).. or blood hypercoagulation. (Ive read in places that at least three quarters of ones one CFS have this issue happening.. and this is so in my case as well). Im assuming you got told to take baby asprin due to hypercoagulation defect. from http://www.hemex.com/publications/cfs_model.php http://www.dfwcfids.org/medical/blood.html "Studies show that between 79% and 92% of CFS and/or FMS patients have hypercoagulation defect." " Following is a list of the myriad symptoms seen in CFIDS, including a rough estimate of the percentage of patients who would have each symptom. Those symptoms that cause patients the greatest discomfort are asterisked (*). Fatigue or exhaustion95 %*Headache90 %*Malaise80 %*Short-term memory loss80 %*Muscle pain75 %*Difficulty concentrating70 %*Joint pain65 %*Depression65 %*Abdominal pain60 %*Lymph node pain50 %*Sore throat50 %*Lack of restful sleep90 %*Muscle weakness30 %Bitter or metallic taste25 %Balance disturbance30 %Diarrhea50 %Constipation40 %Bloating60 %Panic attacks30 %Eye pain30 %Scratchiness in eyes60 %Blurring of vision80 %Double vision10 %Sensitivity to bright lights80 %Numbness and/or tingling in extremities60 %Fainting spells40 %Light-headedness75 %Dizziness30 %Clumsiness30 %Insomnia65 %Fever or sensation of fever85 %Chills30 %Night sweats50 %Weight gain40 %Allergies60 %Chemical sensitivities25 %Palpitations55 %Shortness of breath30 %Flushing rash of the face and cheeks40 %Swelling of the extremities or eyelids20 %Burning on urination20 %Sexual dysfunction20 %Hair loss20 %"from http://www.co-cure.org/dbell_en.htm (there are also many other symptoms common in CFS, this list only lists the ones that at least 20% of ones with CFS or upwards get and some of the very common CFS symptoms eg thirst..aint on that list). I myself have 80 different symptoms with it.Yes, I have done research & have every symptom of chronic fatigue. However, I still feel like there is something else that could be causing this. Especially since autoimmune problems run in my family. I am just looking for answers.
    Anonymous 42789 Replies Flag this Response
  • I know doctors aren't very helpful sometimes. I have sjogren's and have many of the same symptoms that you do. I tested positive for the antibodies, but I read on another site that you can have sjogren's even if you test negative for the antibodies. Other tests they can do are a lip biopsy and a schirmer's test can be used to determine the level of dryness in the eyes. You might want to ask your doctor about those to see what he thinks. I also experience dizziness, nausea, chest pain, dry eye, mouth, nose, almost chronic inflimation in the nasal passages all winter, tingling and pins and needles through my whole body, joint and muscle pain, severe fatigue, at times, pain and changes in color in my hands and feet in the cold, severe rashes, severe anxiety, severe mood changes,sensitivity to light and sound, shortness of breath, severe constipation, i'm sure there would be a lot more syptoms if I cared to think about it. :) It also put me in the hospital with pancreatitis in the past. I'm started taking plaquinil after I got a severe blotchy swollen rash from my neck down to my toes and it dissipated after that. Once in a while a get a couple of rashy patches here and there, but you might want to talk to you dr. to see if that would help with your skin problems. It's supposed to help with energy too; although, I don't know if it actually does. If there's anything I've found, it's that doctors don't understand this condition so they downplay it or tell you it's a virus. Whether or not all of my syptoms are due strictly to sjogren's; I don't know, but I hope this information helps a little bit. You might want to consult with another general doctor or reumatologist to get another opinion. I've found a couple of good books as resources, you might want to read The New Sjogren's Syndrome Handbook, the revised and expanded third addition by the Sjogren's Foundation; I've found it such a relief to see my symptoms listed as a direct cause of the disease, because doctors often make you feel like your crazy or treat you like you're making it up. I really hope that you can find a diagnosis.
    Anonymous 42789 Replies
    • December 24, 2008
    • 11:32 PM
    • 0
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  • Now there was one time my Cortisol was not right & the Endocrinologist had to retest & it was fine the next time so he said the test must have been wrong. There was also another time when my TSH was kinda low but the Endocrinologist acted like that was nothing either. He also did the ACTH testing too & everything turned out fine.That is another CFS/ME thing.. due to the disregulation of the hypothalamus/pituatory (sp?)/ adrenal pathway...one gets dysfunctions in this area.. at least two third of people with it have dysfunctions here. The cortisol dysfunction can make ones levels be going high and low.. with many long term CFS/ME people end up with it low. I'd think there wasnt in fact an issue in that test at all.. but in fact you were showing up this common CFS/ME dysfunction........ Latest CFS studies are showing that there is an increased family incident of various autoimmune issues in CFS too eg more blood relatives have things like diabetes, fibromyalgia etc etc Family illnesses among people with ME/CFS: Blood versus non-blood relatives.Journal: The Journal of IiME, 2, 4-11.Authors:Njoku, M.G., Jason, L.A., & DiPasquale, L. (2008).Abstract:Most research examining the family history of persons with ME/CFS have primarily investigated differences between individuals with ME/CFS and control groups without the illness. Research examining differences between blood and non-blood relatives might contribute to understanding genetic and environmental etiologic factors.The current study investigated the occurrence of five illnesses (i.e., diabetes, Lupus, Multiple Sclerosis, Fibromyalgia and ME/CFS) among blood and non-blood relatives of individuals with ME/CFS. Family history of medical illness was obtained from self report data completed by participants.We determined the number of participants reporting a family history of diabetes, Lupus, Fibromyalgia, Multiple Sclerosis, and ME/CFS between the blood-related family members and non-blood-related family members of participants with ME/CFS. There was a greater prevalence of diabetes, Lupus, Fibromyalgia and ME/CFS among blood relatives than non-blood relatives.The findings of this study suggest that both genetic and environmental factors are associated with ME/CFS." There is certainly a genetic component to the illness so yes it's likely you may have a history of autoimmune issues in your family.
    Anonymous 42789 Replies
    • December 26, 2008
    • 07:31 AM
    • 0
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  • Now, isn't it true that all these tests can be negative & a person can still have secondary Sjogrens?? Yes, it its possible. You need to have your eyes tested for dryness. Don't remember the name of the test, but they put a piece of thin paper inside your lower eyelid to check and see how dry your eye are. Then you need a lip biopsy to test for inflammed minor salivary glands. If both these come back positive for dryness, then you have your diagnose there. Here is the criteria (taken from wikipedia): 1. Ocular symptoms: a positive response to at least one of the following questions:1. Have you had daily, persistent, troublesome dry eyes for more than 3 months? 2. Do you have a recurrent sensation of sand or gravel in the eyes? 3. Do you use tear substitutes more than 3 times a day? 2. Oral symptoms: a positive response to at least one of the following questions:1. Have you had a daily feeling of dry mouth for more than 3 months? 2. Have you had recurrently or persistently swollen salivary glands as an adult? 3. Do you frequently drink liquids to aid in swallowing dry food? 3. Ocular signs - that is, objective evidence of ocular involvement defined as a positive result for at least one of the following two tests:1. Schirmer's test, performed without anaesthesia (≦5 mm in 5 minutes) 2. Rose bengal score or other ocular dye score (≧4 according to van Bijsterveld's scoring system) 4. Histopathology: In minor salivary glands (obtained through normal-appearing mucosa) focal lymphocytic sialoadenitis, evaluated by an expert histopathologist, with a focus score ≧1, defined as a number of lymphocytic foci (which are adjacent to normal-appearing mucous acini and contain more than 50 lymphocytes) per 4 mm2 of glandular tissue.5. Salivary gland involvement: objective evidence of salivary gland involvement defined by a positive result for at least one of the following diagnostic tests:1. Unstimulated whole salivary flow (≦ 1.5 mL in 15 minutes) 2. Parotid sialography showing the presence of diffuse sialectasias (punctate, cavitary,or destructive pattern), without evidence of obstruction in the major ducts. 3. Salivary scintigraphy showing delayed uptake, reduced concentration and/or delayed excretion of tracer 6. Autoantibodies: presence in the serum of the following autoantibodies:1. antibodies to Ro (SSA) or La (SSB) antigens, or both Revised rules for classificationFor primary SSIn patients without any potentially associated disease, primary SS may be defined as follows:a. The presence of any 4 of the 6 items is indicative of primary SS, as long as either item 4 (Histopathology) or 6 (Serology) is positive. b. The presence of any 3 of the 4 objective criteria items (that is, items 3, 4, 5, 6) c. The classification tree procedure represents a valid alternative method for classification, although it should be more properly used in clinical-epidemiological survey. For secondary SSIn patients with a potentially associated disease (for instance, another autoimmune disorder), the presence of item 1 or item 2 plus any two from among items 3, 4, and 5 may be considered as indicative of secondary SS.
    Anonymous 42789 Replies
    • December 27, 2008
    • 00:46 AM
    • 0
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  • Google Chiari Malformation. if you have questions email me at michelle_curves2000@yahoo.com.
    michelle231976 5 Replies
    • December 29, 2008
    • 06:44 PM
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  • If you get a positive lip biopsy they have to accept that you have Sjogren's syndrome. During 6 years of treatment and diagnosis you get a lot of physicians that confuse (irresponsibility or lack of knowledge). I went through that with a rheumatologist in Altamoente Springs. He was very rude to me and told me that I didn't have Lupus neither Sjogren's syndrome. I went to Mayo Clinic and they contradicted him. My diagnostic was confirmed years ago by Michelle Petri from Johns Hopkins (recognized worldwide for her research). The problem with Sjogren's is that there is no real treatment. Everyone talks about Lupus and ignores Sjogren's because there are not real medications for it. They use the Lupus medication. My new rheumatologist tells me that the patients that are medicated are dying sooner than the ones without medication. Great to know after the other rheumatologist (the one that said that I don't have anything) just pumped into my veins very high dosages of prednisone. Next time they will give me a cancer medication that is less harmful than prednisone. Sjogren's is affecting my brain, so I'm cognitive impaired. I practically lost my mind. It can be the Lupus or the Sjogren's. The problem is that sometimes does not show in the testing. I hope that you find some solutions to your problem. Follow you intuition and do not believe every physician. They are human and make mistakes.
    BizcochoFL 1 Replies
    • August 24, 2009
    • 02:19 PM
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  • Your symptoms are a duplicate of mine, but I know that the heat & feet problem comes from nerve damage & isn't always in my feet. I ate fish from a tropical climate & contracted a neuro toxin; Ciguatera.If it were not for the fact that my son & I shared the meal we ouldnt have ever known. I have poor balance, run into walls, terrible fatigue or brain, short term memory problems which include heart racing and uncontrollable sweating & many other symptoms. Likely with only 500, 000 contracting this yearly it would only be a possibility, and there is no easy test for it. From what you described, it looks as if much of this could be neurological, not neccessarily the same as mine. Don't rule out that neurological means for me that the wrong signals are being sent, Just a thought to add to your list to check out. Good luck
    Trindone 18 Replies
    • August 24, 2009
    • 07:25 PM
    • 0
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  • I really hope this will help - I have Lupus, Antiphospholipid syndrome and secondary Sjogren's syndrome, after being diagnosed with a DVT and multiple clots on the lungs (pulmonary embolisms).I couldn't wait for my haematologist, who took between 6-12 months to re-test my blood to fit in with their criteria as to whether I have the illness or not, and the wait between appointments without any help for the symptoms I was experiencing at the time.I was persistent in insisting that my GP referred me to the Homeopathic hospital and then St Thomas's Hospital in London who specialise in Lupus and have a Lupus clinic, where I was diagnosed very quickly.I found it a complete waste of time trying to discuss any of my symptoms with my GP who has no knowledge whatsoever and appeared either too busy or uninterested and on the odd occasion made the suggestion that I was 'depressed'(!),........only from not being heard! I had suffered with endometriosis and IBS in the past and I have heard that there is a possibility that this is all connected to the pill(?), who knows.What I do know is that Homeopathic medicine works for me - It cured my Endometriosis, And has, this past year, given me back 95% of my mobility- I have been given Arnica and Ruta for my chest/rib/leg pains and the pins and needles in my hands,arms and legs. and it all works, and instantly!More importantly I am listened too and taken seriously and not accused of being 'depressed' or mad!You can get a solution if you listen to your body and be insistent with a referral with your GP- Tell them what you want and what you need. Don't be just content with taking medicine with the possibilities of irreversible side-effects which need to be investigated a bit more.Don't dismiss General medicine - but make it work along side complementary medicine.GOOD LUCK!
    Anonymous 42789 Replies
    • December 21, 2009
    • 00:16 AM
    • 0
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  • How are you feeling now? I hope you found out what was wrong with you. I have very similar issues & think it's my thyroid. No doctors are willing to help me treat myself. Always within the 'normal' range.Lost my faith in modern 'corporate' medicine! Hope you are ok. Wishing myself some hope & luck too!!!!
    Anonymous 42789 Replies
    • December 23, 2009
    • 08:13 PM
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  • I have all the same symptoms you are describing and more and I was diagnosed with Sjogrens and Fibromyalgia last summer. I suggest that you be assertive with your doctor and demand answers beyond the bloodwork. I have the same problem with the nonresponsivenss of my doctor and her staff. It's frustrating dealing with all these symptoms and still not getting the medical help you need. I wish I had answers for you, but I'm afraid that most people with undiagnosed autoimmune disease are as frustrated as you and me. It takes a while to get a diagnosis, but eventually you hopefully will. Just be diligent and persistent and document all your symptoms so you can tell your doctor specifics.SORRY SO LONG BUT I HAVE NO ONE TO TALK TO!!! NO ONE REALLY EVER WANTS TO LISTEN.....ESPECIALLY THE DOCTORS (DON'T KNOW WHY BECAUSE THEY ARE SUPPOSED TO BE HERE TO HELP US)Do you think these 2 are related?The reason why I ask is:I have been having horrible problems for years. Just had excision surgery for Endometriosis & of course my problems continued. I saw an Endocrinologist who referred me to a Rhuematologist (after getting a positive Antiparietel Cell Antibody). I saw one Rhuematologist which diagnosed me with Fibromyalgia. I went to another Rhuematologist who said it seems like I do have all the symptoms of Fibromylgia but then did even more blood tests just to make sure (I explained to her that I have also been having miscarriages along with all my MANY MANY other symptoms). She mentioned that she is checking every possible thing & mentioned doing the Antiphospholipid Antibody test for that too. Well, my test results came back & she said that I do not have Lupus. I questioned Sjogrens Syndrome (because my dad's father has it---they were only able to detect it from a lip biopsy) & my dad's brother just found out he had it & it is in remission). She said that I do not have Sjogrens syndrome (because all my blood tests came back fine---I guess the SSA, SSB & ANA----they were all negative). Now, isn't it true that all these tests can be negative & a person can still have secondary Sjogrens?? I really feel like I have Sjogrens but I am not getting the testing that I need. Also, my Rhuematologist advised me that the only test she was concerned about was my Anticardiolipin (which I believe is related to the Antiphospholipid antibody) antibody that came back positive. She advised me to be sure to take a baby aspirin every day & she will see me back in exactly 3 months to do that blood test again to see what is going on & then we will go from there. Of course my doctor did not explain very much to me about this, so I had to do much of my research on the internet. I have not been taking the baby aspirin. I have actually been taking a BC powder every day due to the horrific headaches that I have been having. Other symptoms:Chest pain----sometimes pretty bad but I just ignore it---the other night I just woke up in the middle of the night with horrible palpitations (like my heart was going to come out of my chest---a very horrid feeling) along with profuse sweating & episode of where I felt like I could not breathe along with nausea. I have never have experienced this before. I had to just sit up in bed & try to remain calm & breathe in & out slowly until the episode let up. I was going to go to the ER but did not want to waste the money or time so never did f/u on it. DizzinessHorrible Horrible Fatigue (I barely have enough energy for work). I have to basically do nothing at home so I have enough energy for work.IrritabilityExtreme Dry Eye (I have had since was 19 & I am now 33)---I have used many over the counter eye drops & night time eye salves over the years (of course none really help completely). There are times that my eyes feel like they are sticking to my eyelid. It is not a very nice feeling. I can't even wear contacts. Have tried contacts several times (even the newer varieties) but they always stick to my eyes & eyelids.Dryer & Dryer skin as the years go by (I start to look older & older). I used to have extremely oily beautiful skin---now I look so old.Chronic Urinary problems (with fine cultures). One surgeon told me I had interstitial cystitis but don't know. Try to resort not going to the doctor too much because I don't like to take much antibiotics.Chronic gastrointestinal problems lately I am having clayish colored stools.Chronic dry cough all the timeI have episodes at night where I have to get up & drink lots of water due to cotton mouth---I had an episode about a month ago where I got cotton mouth so bad at work that it felt like my throat was closing shut. I ended up going to a clinic & gave me a shot of a steroid & I was fine the next day.I have episodes that when I stand too long my toes begin to feel funny & they start to turn red as if my circulation has been cut offHot flushes---I get these all the timeHorrible Brain Fog---I feel like I am losing my mind at work Aches & pains that I have all over my bodyMANY MANY other problems Is there a possibility that I may have been diagnosed with Fibromylgia in error. How do we know that something else may be causing all the symptoms of Fibromylgia such as Antiphospholipid Syndrome. How do I know that I do not have Sjogrens Syndrome (that is still undiagnosed due to not having the proper testing) that has led to me having Antiphospholipid Syndrome or vise versa? I know I no longer have Endometriosis because I had excision surgery & it was all removedDoes anyone out there have any answers?What doctor should I see next?THANKS FOR LISTENING!!!!
    Anonymous 42789 Replies Flag this Response
  • SORRY SO LONG BUT I HAVE NO ONE TO TALK TO!!! NO ONE REALLY EVER WANTS TO LISTEN.....ESPECIALLY THE DOCTORS (DON'T KNOW WHY BECAUSE THEY ARE SUPPOSED TO BE HERE TO HELP US) Do you think these 2 are related? The reason why I ask is: I have been having horrible problems for years. Just had excision surgery for Endometriosis & of course my problems continued. I saw an Endocrinologist who referred me to a Rhuematologist (after getting a positive Antiparietel Cell Antibody). I saw one Rhuematologist which diagnosed me with Fibromyalgia. I went to another Rhuematologist who said it seems like I do have all the symptoms of Fibromylgia but then did even more blood tests just to make sure (I explained to her that I have also been having miscarriages along with all my MANY MANY other symptoms). She mentioned that she is checking every possible thing & mentioned doing the Antiphospholipid Antibody test for that too. Well, my test results came back & she said that I do not have Lupus. I questioned Sjogrens Syndrome (because my dad's father has it---they were only able to detect it from a lip biopsy) & my dad's brother just found out he had it & it is in remission). She said that I do not have Sjogrens syndrome (because all my blood tests came back fine---I guess the SSA, SSB & ANA----they were all negative). Now, isn't it true that all these tests can be negative & a person can still have secondary Sjogrens?? I really feel like I have Sjogrens but I am not getting the testing that I need. Also, my Rhuematologist advised me that the only test she was concerned about was my Anticardiolipin (which I believe is related to the Antiphospholipid antibody) antibody that came back positive. She advised me to be sure to take a baby aspirin every day & she will see me back in exactly 3 months to do that blood test again to see what is going on & then we will go from there. Of course my doctor did not explain very much to me about this, so I had to do much of my research on the internet. I have not been taking the baby aspirin. I have actually been taking a BC powder every day due to the horrific headaches that I have been having. Other symptoms: Chest pain----sometimes pretty bad but I just ignore it---the other night I just woke up in the middle of the night with horrible palpitations (like my heart was going to come out of my chest---a very horrid feeling) along with profuse sweating & episode of where I felt like I could not breathe along with nausea. I have never have experienced this before. I had to just sit up in bed & try to remain calm & breathe in & out slowly until the episode let up. I was going to go to the ER but did not want to waste the money or time so never did f/u on it. Dizziness Horrible Horrible Fatigue (I barely have enough energy for work). I have to basically do nothing at home so I have enough energy for work. Irritability Extreme Dry Eye (I have had since was 19 & I am now 33)---I have used many over the counter eye drops & night time eye salves over the years (of course none really help completely). There are times that my eyes feel like they are sticking to my eyelid. It is not a very nice feeling. I can't even wear contacts. Have tried contacts several times (even the newer varieties) but they always stick to my eyes & eyelids. Dryer & Dryer skin as the years go by (I start to look older & older). I used to have extremely oily beautiful skin---now I look so old. Chronic Urinary problems (with fine cultures). One surgeon told me I had interstitial cystitis but don't know. Try to resort not going to the doctor too much because I don't like to take much antibiotics. Chronic gastrointestinal problems lately I am having clayish colored stools. Chronic dry cough all the time I have episodes at night where I have to get up & drink lots of water due to cotton mouth---I had an episode about a month ago where I got cotton mouth so bad at work that it felt like my throat was closing shut. I ended up going to a clinic & gave me a shot of a steroid & I was fine the next day. I have episodes that when I stand too long my toes begin to feel funny & they start to turn red as if my circulation has been cut off Hot flushes---I get these all the time Horrible Brain Fog---I feel like I am losing my mind at work Aches & pains that I have all over my body MANY MANY other problems Is there a possibility that I may have been diagnosed with Fibromylgia in error. How do we know that something else may be causing all the symptoms of Fibromylgia such as Antiphospholipid Syndrome. How do I know that I do not have Sjogrens Syndrome (that is still undiagnosed due to not having the proper testing) that has led to me having Antiphospholipid Syndrome or vise versa? I know I no longer have Endometriosis because I had excision surgery & it was all removed Does anyone out there have any answers? What doctor should I see next? THANKS FOR LISTENING!!!! Hi,I had the really dry mouth last year so dry like you I thought my throat was closing. No matter how much I drank it was not enough. I peed all the time because I drank all the time. I started to get urinary tract infections also. One night I peed for 4and half hours and my stomach hurt so bad. I also had l brain fog, palpatations and pain in my feet, hands, leg and arms and was so tired and weak could hardly walk 50 yards. My skin was so dry I could not stop itiching it which led to huge bruises. I was so bad I thought I would be in a wheel chair within a few months. I also had many other things going on, too many to mention. Eventually, affter MRI's cat scans X rays of my feet and hands, numerous blood tests I found out I have celiac disease. Check into this if you are as deparate as I was you will do the restricted diet that is needed. I have illuminated gluten from my diet and I am now healthy and feel great. Be patient, I wont happen overnight. But google celiac disease as you also have the gastro problems. I didn't. Good luck and let me know if this helps.
    chelsea girl 10 Replies Flag this Response
  • Chelsea Girl,I am SO sorry that you've been having all of these issues. I just wanted to let you know that you do in fact still have endo. I've had 18 surgeries in the last 11 years and it doesn't go away. They clean you out to maintain your fertility (and sanity in some cases!) and to help with pain. I have many of the same symptoms plus a positive ANA and RNP. No one has any answers though. I am being checked for the bladder stuff in March and hoping to come up with some answers there. In the meantime, just take each day as it comes. These are very challenging diseases to live with. I hope you get a diagnosis and some relief soon.Jen
    Anonymous 42789 Replies
    • February 14, 2011
    • 08:44 PM
    • 0
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