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lcmcphee
@lcmcphee

Posts: 6
Joined: Aug 29, 2018

Frustrated

Posted by @lcmcphee, Wed, Aug 29 4:25pm

I was diagnosed with PBC in Dec 2017. I started feeling very fatigued with joint pain in my wrists, fingers, elbows, hips and knees. My GP sent me to a Rheumatologist who repeated the nlood tests and tested more.
My RNP number was 6.5 a month ago and is now 6.7. The dr said I don’t have enough of the symptoms for him to make a diagnosis of MTCD. He wants me to redo the blood work I’m 4 months. My husband doesn’t think that’s an answer. Any suggestions?

REPLY

Hello @lcmcphee — Welcome to Connect. I can certainly understand why you would feel frustrated. Here is a link on Mayo Clinic's website that describes the Test ID: RNP — RNP Antibodies, IgG, Serum:

https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/81357

There is also a page on Mayo's website that discusses Primary biliary cholangitis (PBC) that may be helpful to read through the diagnosis & treatment along with the lifestyle and home remedies and more here:
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/diagnosis-treatment/drc-20376880

I'm also tagging @rosemarya to see if she might have some suggestions. She has posted in an old discussion about PBC but it hasn't had any new posts since 2012:
https://connect.mayoclinic.org/comment/4920/bookmark/e6250d439c9f868fc53ca3800e7a41d943be7dd0ecfdda6ae585394ec5df74d5/

@lcmcphee did the rheumatologist describe the symptoms that would make him think you have MTCD? I would ask him to tell you his reasons as this might prompt you for some more why questions. There's nothing wrong with getting a second opinion if you feel you are not getting answers.

John

@johnbishop

Hello @lcmcphee — Welcome to Connect. I can certainly understand why you would feel frustrated. Here is a link on Mayo Clinic's website that describes the Test ID: RNP — RNP Antibodies, IgG, Serum:

https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/81357

There is also a page on Mayo's website that discusses Primary biliary cholangitis (PBC) that may be helpful to read through the diagnosis & treatment along with the lifestyle and home remedies and more here:
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/diagnosis-treatment/drc-20376880

I'm also tagging @rosemarya to see if she might have some suggestions. She has posted in an old discussion about PBC but it hasn't had any new posts since 2012:
https://connect.mayoclinic.org/comment/4920/bookmark/e6250d439c9f868fc53ca3800e7a41d943be7dd0ecfdda6ae585394ec5df74d5/

@lcmcphee did the rheumatologist describe the symptoms that would make him think you have MTCD? I would ask him to tell you his reasons as this might prompt you for some more why questions. There's nothing wrong with getting a second opinion if you feel you are not getting answers.

John

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Thank you for the links.
The fatigue, joint pain and RNP number led him to considering MTCD. But I don’t have large clumps of hairless or a rash

@lcmcphee , I join John in extending a welcome to you. I see that you mentioned that you were diagnosed with PBC in Dec 2017. Some of your symptoms (fatigue and joint pain and swelling) are also mentioned in the link for PBC that John has included in his message.

I understand the frustration that you are experiencing. I was diagnosed with a liver disease PSC (Primary sclerosing cholangitis) It is also a disease that affects the bile ducts with some connection to autoimmune condition. My PCP, sent me to a gastroenterologist (GI) for treatment of the liver disease. Are you being treated/monitored by a GI for your PSC?

Hello @lcmcphee,

I'd also like to introduce to a few members who've discussed autoimmune hepatitis – a type of autoimmune liver disease that sometimes occurs in patients with PBC. Please meet @luserm1, @atorset, @myminnie @gretagean, @mommynumberone, @avonlady38, @vmbreier, @eroch, @lady1994, @klisa24, @billylin, @lizhope33, @gabrella; I’m certain they would be able to offer more insight.

May I ask if your doctor has prescribed any medications or suggested any changes in diet and lifestyle to mangae this condition?

@kanaazpereira

Hello @lcmcphee,

I'd also like to introduce to a few members who've discussed autoimmune hepatitis – a type of autoimmune liver disease that sometimes occurs in patients with PBC. Please meet @luserm1, @atorset, @myminnie @gretagean, @mommynumberone, @avonlady38, @vmbreier, @eroch, @lady1994, @klisa24, @billylin, @lizhope33, @gabrella; I’m certain they would be able to offer more insight.

May I ask if your doctor has prescribed any medications or suggested any changes in diet and lifestyle to mangae this condition?

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He said that I didn’t exhibit enough other symptoms for him to start any meds other than pain meds if I want them which I dont

@rosemarya

@lcmcphee , I join John in extending a welcome to you. I see that you mentioned that you were diagnosed with PBC in Dec 2017. Some of your symptoms (fatigue and joint pain and swelling) are also mentioned in the link for PBC that John has included in his message.

I understand the frustration that you are experiencing. I was diagnosed with a liver disease PSC (Primary sclerosing cholangitis) It is also a disease that affects the bile ducts with some connection to autoimmune condition. My PCP, sent me to a gastroenterologist (GI) for treatment of the liver disease. Are you being treated/monitored by a GI for your PSC?

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Yes my gastro is also a liver expert. I think the RMP number has triggered the need for more testing. They don’t believe it is from the PBC as my liver enzymes have been good since starting the ursdiol

I need advice! During my last pregnancy, at the age of 43, I experienced several episodes of a skin rash following sun exposure. Red, nickel-sized, raised welts on my upper arms, torso and back. Funny thing, the rash didn't itch rather it hurt deep in my tissue. I miscarried at 16-weeks, 8 weeks later I saw a Dermatologist and I just so happened to have this rash at the time of my appointment. The Dermatologist performed a skin biopsy. The results came back with a positive ANA 1:6.4, homogenous, all other "Antibodies" negative, except a high anticardiolipin IgM antibody. During my first trimester I had an elevated d-Dimer – 2.51(i.e, increase risk for a pulmonary embolism). CT scan was negative.
Fast forward 10 years: I have an official diagnosis of SubAcute Cutaneous Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthritis of my lower back/cervical spine, R Sciatica with radiculopathy and neuropathy, Chronic Kidney stones, proteinuria/hematuria, borderline thrombocytopenia, tendinitis of R shoulder/elbow, joint pain with morning stiffnes, PTSD encompassing insomnia/social behavior disorder/anxiety/major depressive disorder, mucosal sores, alopecia, hx of infections (e.g. urinary tract, kidney, candidiasis, bacterial vaginosis, chronic bronchitis, herpes zoster), metacarpalpharengeal and bilateral wrist neuropathy, occasional swelling in hands/feet, cognitive dysfunction (i.e, memory loss, inability to maintain focus/concentration, disorganization, low tolerance), headaches/migraines, dizziness with occasional vertigo and syncopal episodes, IBS, GERD, OSA with CPAP, and PLMD, Pleuritic chest pain, SOB, Premature Atrial Contractions, COPD, and decreased Diffusion Lung Capacity. The only symptom I do not have is "weight loss!" Go figure! Thanks menopause! Lol
I am a twin and my mother has Crohn's Disease. In the past 10 years I have seen a total of 5 Rheumatologists both in the private sector and within the VA healthcare system. That is where I am currently receiving my healthcare. I cannot get my Rheumatologist to listen to me regarding Systemic Lupus. What to do?

You have a lot of symptoms of Cushing. Have you ever gotten your cortisol checked? Have pituitary and kidneys checked for adenomas

@usafretired15

I need advice! During my last pregnancy, at the age of 43, I experienced several episodes of a skin rash following sun exposure. Red, nickel-sized, raised welts on my upper arms, torso and back. Funny thing, the rash didn't itch rather it hurt deep in my tissue. I miscarried at 16-weeks, 8 weeks later I saw a Dermatologist and I just so happened to have this rash at the time of my appointment. The Dermatologist performed a skin biopsy. The results came back with a positive ANA 1:6.4, homogenous, all other "Antibodies" negative, except a high anticardiolipin IgM antibody. During my first trimester I had an elevated d-Dimer – 2.51(i.e, increase risk for a pulmonary embolism). CT scan was negative.
Fast forward 10 years: I have an official diagnosis of SubAcute Cutaneous Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthritis of my lower back/cervical spine, R Sciatica with radiculopathy and neuropathy, Chronic Kidney stones, proteinuria/hematuria, borderline thrombocytopenia, tendinitis of R shoulder/elbow, joint pain with morning stiffnes, PTSD encompassing insomnia/social behavior disorder/anxiety/major depressive disorder, mucosal sores, alopecia, hx of infections (e.g. urinary tract, kidney, candidiasis, bacterial vaginosis, chronic bronchitis, herpes zoster), metacarpalpharengeal and bilateral wrist neuropathy, occasional swelling in hands/feet, cognitive dysfunction (i.e, memory loss, inability to maintain focus/concentration, disorganization, low tolerance), headaches/migraines, dizziness with occasional vertigo and syncopal episodes, IBS, GERD, OSA with CPAP, and PLMD, Pleuritic chest pain, SOB, Premature Atrial Contractions, COPD, and decreased Diffusion Lung Capacity. The only symptom I do not have is "weight loss!" Go figure! Thanks menopause! Lol
I am a twin and my mother has Crohn's Disease. In the past 10 years I have seen a total of 5 Rheumatologists both in the private sector and within the VA healthcare system. That is where I am currently receiving my healthcare. I cannot get my Rheumatologist to listen to me regarding Systemic Lupus. What to do?

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You must be one strong woman, usafretired15!

@usafretired15

I need advice! During my last pregnancy, at the age of 43, I experienced several episodes of a skin rash following sun exposure. Red, nickel-sized, raised welts on my upper arms, torso and back. Funny thing, the rash didn't itch rather it hurt deep in my tissue. I miscarried at 16-weeks, 8 weeks later I saw a Dermatologist and I just so happened to have this rash at the time of my appointment. The Dermatologist performed a skin biopsy. The results came back with a positive ANA 1:6.4, homogenous, all other "Antibodies" negative, except a high anticardiolipin IgM antibody. During my first trimester I had an elevated d-Dimer – 2.51(i.e, increase risk for a pulmonary embolism). CT scan was negative.
Fast forward 10 years: I have an official diagnosis of SubAcute Cutaneous Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthritis of my lower back/cervical spine, R Sciatica with radiculopathy and neuropathy, Chronic Kidney stones, proteinuria/hematuria, borderline thrombocytopenia, tendinitis of R shoulder/elbow, joint pain with morning stiffnes, PTSD encompassing insomnia/social behavior disorder/anxiety/major depressive disorder, mucosal sores, alopecia, hx of infections (e.g. urinary tract, kidney, candidiasis, bacterial vaginosis, chronic bronchitis, herpes zoster), metacarpalpharengeal and bilateral wrist neuropathy, occasional swelling in hands/feet, cognitive dysfunction (i.e, memory loss, inability to maintain focus/concentration, disorganization, low tolerance), headaches/migraines, dizziness with occasional vertigo and syncopal episodes, IBS, GERD, OSA with CPAP, and PLMD, Pleuritic chest pain, SOB, Premature Atrial Contractions, COPD, and decreased Diffusion Lung Capacity. The only symptom I do not have is "weight loss!" Go figure! Thanks menopause! Lol
I am a twin and my mother has Crohn's Disease. In the past 10 years I have seen a total of 5 Rheumatologists both in the private sector and within the VA healthcare system. That is where I am currently receiving my healthcare. I cannot get my Rheumatologist to listen to me regarding Systemic Lupus. What to do?

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Welcome to Connect, @usafretired15. I have to admit, I really admire your sense of humor in the midst of dealing with so much!
I'd like to introduce you to @regeanna @whyus @butterflygirl @tunkins1 @oregongirl @virginiasenior @helloshelly7969 @wmoser2613 @cathyh @petersen73 @rayhastings @aimeenc as they've discussed similar issues and I hope they will return to share their experiences.

I also found a few discussions that might interest you:
– Systemic lupus erythematosus (SLE): https://connect.mayoclinic.org/discussion/systemic-lupus-erythematosus-sle/
– Tumid Lupus with SLE Symptoms?: https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/
– Have a few autoimmune disorders – now have consistent low grade fever https://connect.mayoclinic.org/discussion/have-a-few-autoimmune-disorders-now-have-consistent-low-grade-fever/

@usafretired15, since you mentioned, "I cannot get my Rheumatologist to listen to me regarding Systemic Lupus," may I ask if they've given you an explanation?

@usafretired15 You present a very interesting picture to me; a lot like mine, with a couple significant exceptions. I am 30 or so years older, and for significant reasons, I have never been pregnant. … Just Male. But I had six sisters and one brother, and almost every element you pose, at least one of us has had or does have it, plus a lot more elements in autoimmune light chain dyscrasia of some sort. Lupus, Crohn's, nickel-sized rashes (Macular Skin) with furrows, bleeding and with infection, Arthritis, Carpal tunnel, tarsal tunnel, positive ANA, LECT2, Apolipoprotein, Gelsolin, AL, etc., etc. I suggest you ask your doctor to start looking at liver and kidney protein issues such as Amyloidosis, Have the doc get in touch with Mayo Amyloidosis Clinic, and watch Dr. Martha Grogan's videos on diagnosing Amyloidosis. If the doctor does, I know a few hundred other folks who who like to have that doc's name. My first clue was that my organs started going bad. Heart, lungs, kidneys, liver, spleen, thyroid, brain, spine. Even my teeth started cracking and breaking off. One doctor group diagnosed it in 20 minutes. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl There is a list of Dr Grogan's suggest tests in there.

@oldkarl

@usafretired15 You present a very interesting picture to me; a lot like mine, with a couple significant exceptions. I am 30 or so years older, and for significant reasons, I have never been pregnant. … Just Male. But I had six sisters and one brother, and almost every element you pose, at least one of us has had or does have it, plus a lot more elements in autoimmune light chain dyscrasia of some sort. Lupus, Crohn's, nickel-sized rashes (Macular Skin) with furrows, bleeding and with infection, Arthritis, Carpal tunnel, tarsal tunnel, positive ANA, LECT2, Apolipoprotein, Gelsolin, AL, etc., etc. I suggest you ask your doctor to start looking at liver and kidney protein issues such as Amyloidosis, Have the doc get in touch with Mayo Amyloidosis Clinic, and watch Dr. Martha Grogan's videos on diagnosing Amyloidosis. If the doctor does, I know a few hundred other folks who who like to have that doc's name. My first clue was that my organs started going bad. Heart, lungs, kidneys, liver, spleen, thyroid, brain, spine. Even my teeth started cracking and breaking off. One doctor group diagnosed it in 20 minutes. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl There is a list of Dr Grogan's suggest tests in there.

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@usafretired15 One thing I forgot to mention. And then the macular, skin looks a lot like melanoma, But it looks like the hashtag sign, or a plowed field, #####, with the furrows at 30/60 degree angles. Melanoma typically is not hashtag.

@lcmcphee

Yes my gastro is also a liver expert. I think the RMP number has triggered the need for more testing. They don’t believe it is from the PBC as my liver enzymes have been good since starting the ursdiol

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It sounds like you have a lot of doctors looking out for you:-) Are they 'talking' to each other or comparing their findings?

@rosemarya

It sounds like you have a lot of doctors looking out for you:-) Are they 'talking' to each other or comparing their findings?

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I don't believe they have communicated with each other, the GP said this isn't my area and sent me back to my gastro who is treating the PBC, who then said the liver is his specialty so I should go to a rheumatologist. He redid the blood work to verify that the RNP number was right on the first blood test, and ordered other tests. He said my blood work looks good except for the 6.7 RNP number. I also had elevated uric acid. So he verified the RNP is indeed elevated, and then said I don't know why, lets wait 4 months and retest. He did order another blood test for muscle enzymes. We should have results next week. I'm not sure what that will show.

@lcmcphee

I don't believe they have communicated with each other, the GP said this isn't my area and sent me back to my gastro who is treating the PBC, who then said the liver is his specialty so I should go to a rheumatologist. He redid the blood work to verify that the RNP number was right on the first blood test, and ordered other tests. He said my blood work looks good except for the 6.7 RNP number. I also had elevated uric acid. So he verified the RNP is indeed elevated, and then said I don't know why, lets wait 4 months and retest. He did order another blood test for muscle enzymes. We should have results next week. I'm not sure what that will show.

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@lcmcphee
I can understand how confusing this must be for you as well as your group of specialists. Many of our members keep track of their lab results, x-rays, MRIs and other diagnostic results. They keep these in a binder and take it with them to each appointment. Nowadays, with electronic medical records, your doctors may be communicating with each other in that manner, but it still might be a good idea for you to keep track of all of your test results as well. You might be able to pick up changes that your doctors might miss in their hurried practices.

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