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mcgke91
@mcgke91

Posts: 9
Joined: Oct 11, 2018

Blood Tests & Diagnosis

Posted by @mcgke91, Thu, Oct 11 4:31pm

Hi all! I would appreciate any advice or guidance. Thanks in advance!

I have been pursuing a diagnosis for years and am feeling at a loss again. I had mono when I was 16 and became very sick. I have what we call "mono flare ups" and my immune system is very weak. I am hospitalized at least once a year and can't fight things like a cold or strep without complications. When I was 22, I started seeing a gastroenterologist because I pain constantly in my side and severe sensitivity with food. My gall bladder was removed in 2015 and my appendix in 2016. Both organs caused extreme pain but I was told that it was odd because the damage seen in both were only showing the start of disease. My GI issues stopped in mid 2017 when I began a vegetarian but have since returned in early 2018. I was diagnosed with fibromyalgia last year as a "stepping stone" towards getting more support and another diagnosis. It started with widespread pain in the majority of the tender points, extreme fatigue, and migraines. I had three referrals to a rheumatologist (two from an internist/PCP and neurologist) that were denied because of the fibromyalgia diagnosis. My new internist/PCP (my previously one left the practice unfortunately) changed my diagnosis after I had a bad flare up that appeared to stem from a bad sun burn while on vacation. I developed severe GI issues (worse than my previous issues), constant migraines, extreme pain in the muscles and joints, unexplained fevers that come and go, and a butterfly rash. My internists/PCPs (the previous and current), physical therapist, and several other health professionals in my life felt lupus was very likely the diagnosis. I finally get into a rheumatologist who dismissed the majority of my symptoms and health history. He met with me for less than 10 minutes and told me that unless my bloodwork comes back positive/abnormal, he would not be able to help me. He stated that the bloodwork would rule out all autoimmune diagnoses and I should see a immunologist or accept that I just have fibromyalgia. I told him I'm fine with fibromyalgia diagnosis but given that I get sick constantly and am running mystery fevers, I feel that something else is going on. I specifically asked if being sick/having poor immune system and fevers is associated with fibromyalgia (which I already know it isn't) and he said no and promptly left the room. The bloodwork ordered was the following: TSH, serum, or plasma; erythrocyte sedimentation rate by Westergren Method; rheumatoid factor; CBC with auto diff.; antinuclear antibodies screen, IFA, serum; and c-reactive protein, quantitative. My bloodwork came back fine so I'm back to square one with more questions than before.

I'm worried because I can't seem to get a provider who will treat me as if I am not a typical patient who presents issues typically. I'm also really disgruntled because I'm skeptical that bloodwork would really rule out the 80-100 autoimmune disorders. Has anyone had any luck getting answers/diagnoses without bloodwork confirming the diagnoses? Has anyone had similar situations? I've been told by previous providers that I'm "too complex" to treat so they recommend me going to the Mayo Clinic, Cleveland Clinic, Johns Hopkins, etc. for testing and answers. I really can't afford that (given I'm in so much medical debt already), but is that really what I need? Can I not get answers any other way?

Liked by toomanyoars

REPLY

Hello @mcgke91, welcome to Connect. I know it's really hard and feels like an uphill battle but I would keep asking questions and learning as much as you can about your health issues…which is what you are doing now, being a strong advocate for your health. @dawn_giacabazi @kdubois @kariulrich and @kanaazpereira may have some suggestions for you.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. It's not really meant to dwell on but it's just a good reference.
https://labtestsonline.org/understanding/conditions/autoimmune/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments
Mayo Clinic's Billing and Insurance — http://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Charitable Care and Financial Assistance at Mayo Clinic — http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

@mcgke91 It sounds like you are pretty organized and good records. Do you track your symptoms or write them down? Just thinking that might be helpful to take them with you to appointments.

John

@johnbishop

Hello @mcgke91, welcome to Connect. I know it's really hard and feels like an uphill battle but I would keep asking questions and learning as much as you can about your health issues…which is what you are doing now, being a strong advocate for your health. @dawn_giacabazi @kdubois @kariulrich and @kanaazpereira may have some suggestions for you.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. It's not really meant to dwell on but it's just a good reference.
https://labtestsonline.org/understanding/conditions/autoimmune/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments
Mayo Clinic's Billing and Insurance — http://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Charitable Care and Financial Assistance at Mayo Clinic — http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

@mcgke91 It sounds like you are pretty organized and good records. Do you track your symptoms or write them down? Just thinking that might be helpful to take them with you to appointments.

John

Jump to this post

Thanks for the reply! I appreciate it. I'll look into the Mayo Clinic and see if my insurance covers it at all as well as the links you provided.

I keep my test results saved on my personal computer. When it comes to medication and symptoms, I use the MediSafe app for when I need to take PRN medications (e.g., migraines, increased pain, etc.) and the FeverTracker app to track my temperature throughout the day. I find though since getting the disappointing news from the rheumatologist, I haven't been as diligent in my tracking as I used to be. Would you recommend tracking anything else or any other apps that help?

@mcgke91

Thanks for the reply! I appreciate it. I'll look into the Mayo Clinic and see if my insurance covers it at all as well as the links you provided.

I keep my test results saved on my personal computer. When it comes to medication and symptoms, I use the MediSafe app for when I need to take PRN medications (e.g., migraines, increased pain, etc.) and the FeverTracker app to track my temperature throughout the day. I find though since getting the disappointing news from the rheumatologist, I haven't been as diligent in my tracking as I used to be. Would you recommend tracking anything else or any other apps that help?

Jump to this post

It may help to track your pain if you have flare ups and days when you are really hurting. When I was tapering off of prednisone for my polymyalgia rheumatica I would keep a 0 to 10 pain scale as I changed dosage every week or so. I'm not sure how helpful it would be but it's another talking point for discussing with your doctor…what's causing this pain? ☺ I have an Apple watch and Kardia band so I track my BP every morning and take an EKG which also write to the Health app as well as their own app. I'm really not sure it's helping but makes me feel better to know all is well when I get good readings. They do give a lot of what seems like false readings too and that was a little disconcerting until I realized it. I just read an article somewhere that the new tech on the Apple watch may lead to a lot of extra doctor visits that aren't really needed.

@mcgke91

Thanks for the reply! I appreciate it. I'll look into the Mayo Clinic and see if my insurance covers it at all as well as the links you provided.

I keep my test results saved on my personal computer. When it comes to medication and symptoms, I use the MediSafe app for when I need to take PRN medications (e.g., migraines, increased pain, etc.) and the FeverTracker app to track my temperature throughout the day. I find though since getting the disappointing news from the rheumatologist, I haven't been as diligent in my tracking as I used to be. Would you recommend tracking anything else or any other apps that help?

Jump to this post

Hello and welcome! I’m so sorry about the way the rheumatologist treated you. It sounds to me lupus might be a good fit with the malar rash you stated above. Unfortunately some doctors believe in labs rather than the person right in front of them. According to multiple site lab work will fluctuate with lupus depending on where in the disease process you are and not ever lupus patient has the same labs or same symptoms. It’s a very frustrating disease all around, especially when being diagnosed is concerned. Please don’t give up! Find a different rheumatologist, my suggestion would be to try and schedule an appointment with Mayo. I have a post titled “Possible Lupus etc” sorry I don’t remember the full title, the brain fog that comes with lupus is a pain. A comment to the post about getting an appointment was really helpful. I document my symptoms using HelloLupus app. I get to document fevers, heart rate problems, and many other problems that often are caused by lupus. I hope this helps you in some way!

Best of Luck!

Nicole

Hi @mcgke91,

Here's the discussion that @nikohl7 was referring to:
– Possible Lupus and Getting An Appointment: https://connect.mayoclinic.org/discussion/possible-lupus-and-getting-an-appointment/

@johnbishop

It may help to track your pain if you have flare ups and days when you are really hurting. When I was tapering off of prednisone for my polymyalgia rheumatica I would keep a 0 to 10 pain scale as I changed dosage every week or so. I'm not sure how helpful it would be but it's another talking point for discussing with your doctor…what's causing this pain? ☺ I have an Apple watch and Kardia band so I track my BP every morning and take an EKG which also write to the Health app as well as their own app. I'm really not sure it's helping but makes me feel better to know all is well when I get good readings. They do give a lot of what seems like false readings too and that was a little disconcerting until I realized it. I just read an article somewhere that the new tech on the Apple watch may lead to a lot of extra doctor visits that aren't really needed.

Jump to this post

I had a Fitbit and loved tracking food, monitoring steps, and keeping an eye on my heartbeat through it. Unfortunately it broke but I plan on getting another one. So much tracking with chronic illness but I’ll do anything to prevent a flare.

@nikohl7

Hello and welcome! I’m so sorry about the way the rheumatologist treated you. It sounds to me lupus might be a good fit with the malar rash you stated above. Unfortunately some doctors believe in labs rather than the person right in front of them. According to multiple site lab work will fluctuate with lupus depending on where in the disease process you are and not ever lupus patient has the same labs or same symptoms. It’s a very frustrating disease all around, especially when being diagnosed is concerned. Please don’t give up! Find a different rheumatologist, my suggestion would be to try and schedule an appointment with Mayo. I have a post titled “Possible Lupus etc” sorry I don’t remember the full title, the brain fog that comes with lupus is a pain. A comment to the post about getting an appointment was really helpful. I document my symptoms using HelloLupus app. I get to document fevers, heart rate problems, and many other problems that often are caused by lupus. I hope this helps you in some way!

Best of Luck!

Nicole

Jump to this post

Thanks for the reply! I’ll be sure to check out the post. I’ve been discussing scheduling with a Mayo Clinic with my partner and we both feel it’s time to take the plunge.

I wasn’t able to find the HelloLupus app when I did a search. Is that for iPhones or Android? I was able to get a list of apps other people use when Googling that I might try in addition to MediSafe, Fever Tracker, and Curable (and Fitbit when I can get a new one).

@kanaazpereira

Hi @mcgke91,

Here's the discussion that @nikohl7 was referring to:
– Possible Lupus and Getting An Appointment: https://connect.mayoclinic.org/discussion/possible-lupus-and-getting-an-appointment/

Jump to this post

Thanks so much! I appreciate it!

@mcgke91

Thanks for the reply! I’ll be sure to check out the post. I’ve been discussing scheduling with a Mayo Clinic with my partner and we both feel it’s time to take the plunge.

I wasn’t able to find the HelloLupus app when I did a search. Is that for iPhones or Android? I was able to get a list of apps other people use when Googling that I might try in addition to MediSafe, Fever Tracker, and Curable (and Fitbit when I can get a new one).

Jump to this post

I apologize about the info on the app. When it reminds me to log the symptoms for the day it pops up as HelloLupus, turns out it is MyLupusTracker. It is an IOS app, I am unsure about if it is available for Android but I can do some more research into apps for you.

Hi, @mcgke91. I feel your pain. I unfortunately have multiple medical problems, and have found some doctors to be dismissive if my symptoms don't fit into their box. Wrt your diagnosis, there actually are a few autoimmune disorders that can be seronegative, meaning that no blood tests come back abnormal. Psoriatic arthritis and reactive arthritis are good examples. I think that nikohl7 may've already said this, but lupus can show up as being seronegative in the beginning. I've now done pretty extensive reading on lupus through a service meant for physicians that goes into diagnostic criteria in detail (uptodate.com), and, from that reading, I also think your symptoms sound like lupus. Sounds to me like you need to consult with a different rheumatologist. Do you have that possibility? Don't give up hope. Your symptoms sound way more classic than mine, so I don't know why you couldn't find a doctor, including outside of a place like Mayo, who could give you a proper diagnosis and get you started on treatment.

Liked by gingerw

Btw, medscape has many good articles on autoimmune disorders that go into diagnostic criteria, and that are free, if you haven't tried that yet.

Liked by gingerw

Oh, and also, the reading I've done suggests that fibromyalgia is actually frequently a co-morbidity of other autoimmune disorders, including lupus. So, it's kind of ridiculous that being diagnosed with that would make any physician think you didn't also have an autoimmune disorder.

Liked by gingerw

@pattym

Oh, and also, the reading I've done suggests that fibromyalgia is actually frequently a co-morbidity of other autoimmune disorders, including lupus. So, it's kind of ridiculous that being diagnosed with that would make any physician think you didn't also have an autoimmune disorder.

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Patty, thank you for your response! I agree that it’s sounds like lupus. There have been so many things that frustrate me about this process because I’ve been searching for a diagnosis for years and am just feeling stuck. Of the typical lupus symptoms, I don’t have the seizures or oral sores (at least I don’t think because I haven’t seen pictures that would show early onset). Especially with a EBV test last year stating that I had recent exposure to the virus yet I was diagnosed with it back in 2008. The recent link of EBV to lupus and other autoimmune is something I’m trying to stress to my providers as well. You’d think that I didn’t live in a big city without lots of specialists based off these responses. I’ve been recommended to the Mayo Clinic at least 3 times in the last 4 years because it these things. Ugh. Just so frustrated.

Perhaps you could look to the "Eastern" approaches to wellnes and healing where diagnoses are less important and the focus is more on being well than on being sick. I used to have an autoimmune disease but don't anymore. I practice Qigong.

My drs say I am complicated, but never refused to help me. I tell them I am a challenge.I have spent a lifetime with problems no one can diagnose. I told dentist I that I would never get novacaine shot again. Then found out I have no pain when drilling cavities. Told a new dentist this, he got all huffy, told me he had seen 10,000 patients & all needed shots. After the 10th cavity done, he left and never saw again, he didn't show his face or apologize. Found out my sister had same thing. I still have pain in mouth, just not drilling. So you will need to look elsewhere for a dr, because yours was lazy. I had butterfly rash, all tests normal, I don't give up. Found online a test called anti-sm or anti-smith, tested positive for lupus 3 times. That was 15 yrs ago, last few yrs been negative, was told the numbers go up and down. Have had fibro since 84. A couple yrs ago went to urgent care for bladder infection. When done he says stand up. He then took his thumbs and dug really hard into my hips, I am trying to get away, and swatting him. Thought I would die, he probably thought the fibro was a fake. I called the clinic manager to complain, she was shocked. Yes still there, I am not.

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