1. < Autoimmune Diseases

Autoimmune? Undiagnosed and don’t know where to go next

Posted by beanie300 @beanie300, Nov 7, 2018

I am posting here in hopes that someone out there has experienced something similar or can at least tell me where to turn next when it comes to figuring out my illness. A friend of mine who has lupus said it sounded like it could be autoimmune but I really don’t know anymore!

The following chunk is going to be a long medical history and I apologize, I just want to give as much information as possible in hopes of getting help.

I was born premature but had amazing algae scores and was sent home that day. My mother tells me I was always sick as a baby with chronic throat infections of some kind or other. She made the doctors remove my tonsils before I was 2 in hopes that it would help but it didn’t seem to. Growing up I remember always being sick. I seemed to get every bug going around but was always especially susceptible to strep throat infections and sinus infections. I was sick so much that by highschool I am pretty sure I only was actually able to attend around 2/3 of the total days in the school year. Maybe even less than that and this wasn’t me staying home with colds, this was constant stomach flu, upset respritory infections, and of course strep throat. I also had constant hives and dermatographia since I was young and still have it to this day! The doctors always wrote it off, saying it was probably a food allergy, but never really looked into it. I also never ran fevers as a kid and instead run at a constant 97.6.

In 2016 my constant bad health seemed to take a turn for the worst. Right after graduating highschool I got so sick I was bedridden for the whole summer. I was throwing up, having joint pain, and sleeping all the time. No fever but I NEVER run fevers. After a month of it my mother took me in to my family doctor. She ran a mono test and Lyme test which both came back negative but she was sure it was mono so she told me to come back in a few weeks. I did but the test was negative again, and then again when I came in another month later. My white counts were high but they couldn’t figure out what was wrong other than that. Finally after 4 months I got better and stopped going back to the doctor, just in time for me to go to my freshmen year of college.

I made it through my first semester, despite the fact I got stomach flu and strep a few times but then part way through my second semester I got sick again. I was throwing up to the point I had to be hospitalized for fluids. All of my lymph nodes were so swollen I didn’t even look like I had a neck and was having a hard time swallowing. This time it turned out I actually did have mono. I had to leave my college and go home to recover. It took a total of about 4 months to get better but I never felt 100% again after that. My doctor told me it could take up to a year to feel fully better so I decided to take time off of college and get a job.

The job lasted about three months. I was so tired in that time that I would get up to go to work, struggle through my shift, go home, and immediately go to sleep. I was only awake about 10 hours a day but I figured it was just because I wasn’t used to working and would adjust. Then I started developing severe joint pain and stiffness, to the point that it was hard to get up off the couch simply because I couldn’t unbend. Both of my parents have rheumatoid arthritis so I assumed it was that and went in to my doctor for testing. I was only 20 and knew I shouldn’t be feeling as old as I suddenly felt. She ran an ANA that came back normal. A week later I passed out in the shower. My parents and I assumed maybe the water had been to hit and left it at that. Another week later I passed out at work. The fainting episodes became a normal part of my life which led to me quitting my job.

I went to see my primary physician again but she was clueless. She ran a complete blood count, metobolic panel, and tested me for Addison’s disease. It all came back fine aside from a slightly elevated white blood count. She then referred me to doctor number 2, an internist.

Doctor number 2 was probably the best I had ever seen. Listened to my story then tested me for dermatographia before I had even mentioned the hives or dermatographia. He sent me to an allergist.

Doctor number 3, the allergist. I explained the dermatographia and the fact that I had it, along with hives, since I was a kid. We had never been able to link the hives to any food and explained that sometimes I would break out in hives because of the heat or because of crying or getting stressed. He told me he couldn’t test me with the scratch test because I had dermatographia but that he could test my blood for allergies. He told me he didn’t think this would be helpful however because the would only be able to test for a few things and he said my hives sounded idiopathic. I went home without the test.

I followed up with my internist, doctor number 2, but while the nurse was taking my vitals she found I had a heart murmur. I was sent for an ultrasound of my heart and they found I had a mitral valve prolapse but told me it was nothing to be concerned about. I went back in later for the follow up and the nurse took my vitals and found I had a heart arythmia. They gave me a 24 hour heart monitor. I only actually ended up wearing the monitor for 20 hours because the sticky pad things they used caused my skin to blister up and peel off.

The cardiologist I saw, doctor number 4, told me my heart murmur was benign and then went on to suggest that maybe I was on too many medications due to the fact that I take an anti anxiety, and antidepressant.

Back to doctor number 2, my internist. He gave me two different anti-histamines and sent me home in hopes it would improve my symptoms.

All of my symptoms kept getting worse. I developed brain fog, trouble concentrating, headaches, and none of my previous symptoms improved. I turned to the internet in hopes of figuring out why I was fainting and read about postural orthostatic tachycardia syndrome or POTS for short. I went to my doctor that week and asked if he had ever heard of it. He told me he didn’t think that was what I had, as it was rare, and sent me home. My mother convinced me to go back and demand to be tested, and it turns out I do have POTS. On an average day, my heart rate laying is 55 and it jumps to 130 when I am standing.

Thankfully now that I know what is going on I was able to start managing symptoms and hoped it would help with everything from the fainting to fatigue, joint pain to brain fog.

I started developing new symptoms. My brain seems to scramble words when I read now or it messes up grammar. I have a persistent pain in my left side that doctors can’t explain. My rib cage in the front on my left side also goes through flair ups where it hurts when I breath and I have been developing migraines.

The fatigue got worse until I was only awake about 2-4 hours a day total and all of my lymph glands swelled up again. It felt like when I had mono so I went in to try and figure out what was going on. My internist sent me to doctor number 5, an infectious disease specialist, who told me I had a mono reactivation. At this point it had been exactly a year since I left college with my first bout of mono. He said it was really rare and he wanted to test my immune system. He ran a complete blood count, C-reactive protein test, t-cell test, and a few others. Everything came back normal.

My doctor said he had no idea why I got mono again and seems to have no idea what to do with my other symptoms! I want to ask for more tests but I don’t even know what tests to ask for anymore or what doctors to ask to see and I am afraid they are going to diagnose me as a hypochondriac!

Currently my symptoms are
– dermatographia
– hives (particularly when upset but often without obvious cause)
– migraines
– joint pain
– joint stiffness
– Nausea
– loss of appitite
– brain fog
– trouble concentrating
– extreme fatigue
– vomiting, sometimes without even feeling ill beforehand
– dizziness
– pain in my left side, about where my spleen is, but doctors say my spleen is not enlarged
– pain in my ribs sometimes when I breath that lasts a few hours
– no fevers ever.
-numbness and tingling in my hands and feet at times
– mouth ulcers. (I have had these since I was a kid. The come and go. I sort of get break outs of them)

Anyone have any ideas? Anything helps. I just want to go finish college and move on to my career but can’t do that while I am this sick! I am a 21 year old white female if that helps anything.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Jan 11, 2020
In reply to @socalgirlntx "Hello Group - I have recently had a positive ANA test with titer of 1:2560. I..." + (show)
@socalgirlntx

Hello Group - I have recently had a positive ANA test with titer of 1:2560. I am a 55 year-old woman. I have been referred to a rheumatologist but can only get on a waiting list at this point with a delay of at least six months. Very frustrating. My symptoms have been getting progressively worse over the last three years which caused my GP to finally order an ANA test. My quality of life is decreasing so the idea of waiting at least half a year for a diagnosis is daunting to say the least. I'm hoping to get some direction from anyone that is experiencing similar issues and may have more information because they're farther along in the medical process. I'm including any information that is out of the norm for my usual good health in the past.

I have lived with Grave's Disease for about 20 years. I responded well to anti-thyroid meds and only recently was put on synthetic thyroid because my thyroid has "burned out" which apparently is expected after overproducing thyroid for so long.

Most severe symptoms are as follows:
Chronic Dry Eye (I have tried Restasis with no improvement) - I have to use artificial tears about every 10-15 minutes. My visual clarity is really suffering. I'm a full-time student so this makes studying very difficult. The only relief I get is by using warm/moist compresses, but the relief is very short-lived. I'm really scared I will eventually lose my eyesight altogether.

Chronic Inflammation in the upper colon (colonoscopy about 8 months ago). This causes pain EVERY time I eat. I have also lost about 30 pounds over the last 3 years. I think I have subconsciously decreased my eating in order to avoid the pain that comes after eating. Although I rarely have much of an appetite. I tend to eat only because I know I'm supposed to.

Dry Mouth and clogged saliva glands near the back of my jaw. Usually when this happens, I can apply warm compresses and massage the area and it gets better within a few days. I also have to drink whenever I do eat anything because I'm not producing enough saliva.

Fatigue - I am really tired almost all the time. I am normally an active and healthy person, so this is really frustrating. Some of this fatigue may be related to difficulty in sleeping. I take a prescription to help, but it only helps me to fall asleep but not to stay asleep.

Muscle weakness - I have a significant decrease in the strength in my hands, arms and legs. I've gotten to where I can't even open a lid on a gatorade or juice bottle. Thank goodness my husband or son are usually close by. I also have been diagnosed as having some significant arthritis in the joints in my fingers shown in an x-ray.

Headaches and "Brain Fog" - Kind of strange headaches that are less generalized as far as where I feel them. These headaches are kind of spread all over and sometimes felt more on the top of my head as opposed to stress headaches that I feel at my temples. I also have much more difficulty being able to maintain clear thought processing and find myself mildly confused much of the time. This makes studying for school exceedingly difficult.

High Blood Pressure that resolved itself once I began thyroid replacement therapy.

Although not as distressing, but still an issue is mild hair loss. My hair is about half as thick as it used to be on my scalp. However I have lost almost all of my body hair (saves me from having to shave my legs! Ha ha) I'm not sure if this is related to age or if it's related to my more current health issues.

These are some specifics on blood tests. I'm only including items that are outside of what's considered "normal". Some are more significantly out of norm than others. I have no clue as to the significance.

ANA SCREEN - Positive with 1:2560 titer. High results for SSA-52 (294 AU/ml) SSA-60 (182 AU/ml) SSB (114 AU/ml) I had negative results for Double-Stranded DNA antibody, Smith Antibody, Jo-1 Antibody and Scleroderma antibody.Antinuclear Antiboy with HEp-2 substrate, IgG by TFA was detected (Ref Interval 1:80)

CBC with Auto Diff (Only listing out of Norm): Hemoglobin 11.9, Lymphs 0.9, MCHC 31.8, Neut Abs 1.5, WBC 2.8

METABOLIC PANEL - All within normal range

LIPID PROFILE - Cholesteral, Total was (147) and HDL was (34)

THYROID SCREENING - Thyroglobulin Ab (8,807.7) and Thyroid Peroxidase Ab (633) - I'm sure this is related to the Grave's Disease, but not sure if it could be related so I'm including the information.

I am not sure what's relevant, but have tried to include as much information as possible. I'm just hoping someone else may have experienced similar issues and might help me to at least gain a better understanding of the "big picture". I am certainly not expecting to get any type of a diagnosis. I would also be interested in supplements or dietary information that may alleviate some of the more pressing symptoms I am experiencing.

Thank you in advance.

Jump to this post

Hello @socalgirlntx, welcome to Connect. I'm tagging our Director @colleenyoung to see if we should move your post to the following similar discussion where you can meet other members with the same or similar symptoms and your post will have more visibility.

> Groups > Autoimmune Diseases > Undiagnosed and don’t know where to go next
-- https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

You might also be interested in reading through the following discussion:
> Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
— https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Have you thought about getting a second opinion? 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

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 11, 2020
In reply to @socalgirlntx "Hello Group - I have recently had a positive ANA test with titer of 1:2560. I..." + (show)
@socalgirlntx

Hello Group - I have recently had a positive ANA test with titer of 1:2560. I am a 55 year-old woman. I have been referred to a rheumatologist but can only get on a waiting list at this point with a delay of at least six months. Very frustrating. My symptoms have been getting progressively worse over the last three years which caused my GP to finally order an ANA test. My quality of life is decreasing so the idea of waiting at least half a year for a diagnosis is daunting to say the least. I'm hoping to get some direction from anyone that is experiencing similar issues and may have more information because they're farther along in the medical process. I'm including any information that is out of the norm for my usual good health in the past.

I have lived with Grave's Disease for about 20 years. I responded well to anti-thyroid meds and only recently was put on synthetic thyroid because my thyroid has "burned out" which apparently is expected after overproducing thyroid for so long.

Most severe symptoms are as follows:
Chronic Dry Eye (I have tried Restasis with no improvement) - I have to use artificial tears about every 10-15 minutes. My visual clarity is really suffering. I'm a full-time student so this makes studying very difficult. The only relief I get is by using warm/moist compresses, but the relief is very short-lived. I'm really scared I will eventually lose my eyesight altogether.

Chronic Inflammation in the upper colon (colonoscopy about 8 months ago). This causes pain EVERY time I eat. I have also lost about 30 pounds over the last 3 years. I think I have subconsciously decreased my eating in order to avoid the pain that comes after eating. Although I rarely have much of an appetite. I tend to eat only because I know I'm supposed to.

Dry Mouth and clogged saliva glands near the back of my jaw. Usually when this happens, I can apply warm compresses and massage the area and it gets better within a few days. I also have to drink whenever I do eat anything because I'm not producing enough saliva.

Fatigue - I am really tired almost all the time. I am normally an active and healthy person, so this is really frustrating. Some of this fatigue may be related to difficulty in sleeping. I take a prescription to help, but it only helps me to fall asleep but not to stay asleep.

Muscle weakness - I have a significant decrease in the strength in my hands, arms and legs. I've gotten to where I can't even open a lid on a gatorade or juice bottle. Thank goodness my husband or son are usually close by. I also have been diagnosed as having some significant arthritis in the joints in my fingers shown in an x-ray.

Headaches and "Brain Fog" - Kind of strange headaches that are less generalized as far as where I feel them. These headaches are kind of spread all over and sometimes felt more on the top of my head as opposed to stress headaches that I feel at my temples. I also have much more difficulty being able to maintain clear thought processing and find myself mildly confused much of the time. This makes studying for school exceedingly difficult.

High Blood Pressure that resolved itself once I began thyroid replacement therapy.

Although not as distressing, but still an issue is mild hair loss. My hair is about half as thick as it used to be on my scalp. However I have lost almost all of my body hair (saves me from having to shave my legs! Ha ha) I'm not sure if this is related to age or if it's related to my more current health issues.

These are some specifics on blood tests. I'm only including items that are outside of what's considered "normal". Some are more significantly out of norm than others. I have no clue as to the significance.

ANA SCREEN - Positive with 1:2560 titer. High results for SSA-52 (294 AU/ml) SSA-60 (182 AU/ml) SSB (114 AU/ml) I had negative results for Double-Stranded DNA antibody, Smith Antibody, Jo-1 Antibody and Scleroderma antibody.Antinuclear Antiboy with HEp-2 substrate, IgG by TFA was detected (Ref Interval 1:80)

CBC with Auto Diff (Only listing out of Norm): Hemoglobin 11.9, Lymphs 0.9, MCHC 31.8, Neut Abs 1.5, WBC 2.8

METABOLIC PANEL - All within normal range

LIPID PROFILE - Cholesteral, Total was (147) and HDL was (34)

THYROID SCREENING - Thyroglobulin Ab (8,807.7) and Thyroid Peroxidase Ab (633) - I'm sure this is related to the Grave's Disease, but not sure if it could be related so I'm including the information.

I am not sure what's relevant, but have tried to include as much information as possible. I'm just hoping someone else may have experienced similar issues and might help me to at least gain a better understanding of the "big picture". I am certainly not expecting to get any type of a diagnosis. I would also be interested in supplements or dietary information that may alleviate some of the more pressing symptoms I am experiencing.

Thank you in advance.

Jump to this post

Welcome @socalgirlntx . I’m glad you have found MayoClinicConnect. We’re a varied group of people who share our health journeys, and information and support. We’re not doctors so can’t really diagnose or suggest medications, but people here are great at helping each other. I found MayoClinicConnect when I, too, had a bunch of strange symptoms. My problems were all GI but they eventually found the cause in my brain. 🥴. You’ve mentioned a wait of 6 months to see a rheumatologist. Do you live near any big cities with major medical centers or university hospitals? You might try contacting one and asking for help. Or ask your physician to summarize your problem in a letter to them. This is what I had to do. My husband allied the university medical center and was able to get an appointment and someone who would pay attention. I’m so glad he did! Is this something you might try?

REPLY
1 reply
socalgirlntx | @socalgirlntx | Jan 11, 2020

Hello Group - I have recently had a positive ANA test with titer of 1:2560. I am a 55 year-old woman. I have been referred to a rheumatologist but can only get on a waiting list at this point with a delay of at least six months. Very frustrating. My symptoms have been getting progressively worse over the last three years which caused my GP to finally order an ANA test. My quality of life is decreasing so the idea of waiting at least half a year for a diagnosis is daunting to say the least. I'm hoping to get some direction from anyone that is experiencing similar issues and may have more information because they're farther along in the medical process. I'm including any information that is out of the norm for my usual good health in the past.

I have lived with Grave's Disease for about 20 years. I responded well to anti-thyroid meds and only recently was put on synthetic thyroid because my thyroid has "burned out" which apparently is expected after overproducing thyroid for so long.

Most severe symptoms are as follows:
Chronic Dry Eye (I have tried Restasis with no improvement) - I have to use artificial tears about every 10-15 minutes. My visual clarity is really suffering. I'm a full-time student so this makes studying very difficult. The only relief I get is by using warm/moist compresses, but the relief is very short-lived. I'm really scared I will eventually lose my eyesight altogether.

Chronic Inflammation in the upper colon (colonoscopy about 8 months ago). This causes pain EVERY time I eat. I have also lost about 30 pounds over the last 3 years. I think I have subconsciously decreased my eating in order to avoid the pain that comes after eating. Although I rarely have much of an appetite. I tend to eat only because I know I'm supposed to.

Dry Mouth and clogged saliva glands near the back of my jaw. Usually when this happens, I can apply warm compresses and massage the area and it gets better within a few days. I also have to drink whenever I do eat anything because I'm not producing enough saliva.

Fatigue - I am really tired almost all the time. I am normally an active and healthy person, so this is really frustrating. Some of this fatigue may be related to difficulty in sleeping. I take a prescription to help, but it only helps me to fall asleep but not to stay asleep.

Muscle weakness - I have a significant decrease in the strength in my hands, arms and legs. I've gotten to where I can't even open a lid on a gatorade or juice bottle. Thank goodness my husband or son are usually close by. I also have been diagnosed as having some significant arthritis in the joints in my fingers shown in an x-ray.

Headaches and "Brain Fog" - Kind of strange headaches that are less generalized as far as where I feel them. These headaches are kind of spread all over and sometimes felt more on the top of my head as opposed to stress headaches that I feel at my temples. I also have much more difficulty being able to maintain clear thought processing and find myself mildly confused much of the time. This makes studying for school exceedingly difficult.

High Blood Pressure that resolved itself once I began thyroid replacement therapy.

Although not as distressing, but still an issue is mild hair loss. My hair is about half as thick as it used to be on my scalp. However I have lost almost all of my body hair (saves me from having to shave my legs! Ha ha) I'm not sure if this is related to age or if it's related to my more current health issues.

These are some specifics on blood tests. I'm only including items that are outside of what's considered "normal". Some are more significantly out of norm than others. I have no clue as to the significance.

ANA SCREEN - Positive with 1:2560 titer. High results for SSA-52 (294 AU/ml) SSA-60 (182 AU/ml) SSB (114 AU/ml) I had negative results for Double-Stranded DNA antibody, Smith Antibody, Jo-1 Antibody and Scleroderma antibody.Antinuclear Antiboy with HEp-2 substrate, IgG by TFA was detected (Ref Interval 1:80)

CBC with Auto Diff (Only listing out of Norm): Hemoglobin 11.9, Lymphs 0.9, MCHC 31.8, Neut Abs 1.5, WBC 2.8

METABOLIC PANEL - All within normal range

LIPID PROFILE - Cholesteral, Total was (147) and HDL was (34)

THYROID SCREENING - Thyroglobulin Ab (8,807.7) and Thyroid Peroxidase Ab (633) - I'm sure this is related to the Grave's Disease, but not sure if it could be related so I'm including the information.

I am not sure what's relevant, but have tried to include as much information as possible. I'm just hoping someone else may have experienced similar issues and might help me to at least gain a better understanding of the "big picture". I am certainly not expecting to get any type of a diagnosis. I would also be interested in supplements or dietary information that may alleviate some of the more pressing symptoms I am experiencing.

Thank you in advance.

REPLY
3 replies
socalgirlntx | @socalgirlntx | Jan 13, 2020
In reply to @becsbuddy "Welcome @socalgirlntx . I’m glad you have found MayoClinicConnect. We’re a varied group of people who..." + (show)
@becsbuddy

Welcome @socalgirlntx . I’m glad you have found MayoClinicConnect. We’re a varied group of people who share our health journeys, and information and support. We’re not doctors so can’t really diagnose or suggest medications, but people here are great at helping each other. I found MayoClinicConnect when I, too, had a bunch of strange symptoms. My problems were all GI but they eventually found the cause in my brain. 🥴. You’ve mentioned a wait of 6 months to see a rheumatologist. Do you live near any big cities with major medical centers or university hospitals? You might try contacting one and asking for help. Or ask your physician to summarize your problem in a letter to them. This is what I had to do. My husband allied the university medical center and was able to get an appointment and someone who would pay attention. I’m so glad he did! Is this something you might try?

Jump to this post

I am about 4 hours from Salt Lake City. I will see what might be available there. It would be worth the drive for an answer. Thank you.

REPLY
nire | @nire | Jan 14, 2020
In reply to @jodyradney "I have been reading many of the posts and feel able today to post my story...." + (show)
@jodyradney

I have been reading many of the posts and feel able today to post my story. Before July of 2017, I was very active even doing Zumba twice a week and caring for elderly mom. I have an an undiagnosed auto immune disease which began July 2017. Symptoms are so plentiful and diverse that I have had many doctors tell me I am a mystery. Not something any of us want to hear. I have been in the hospital 5 different times including the Mayo Clinic Minnesota since last year - all for different problems. I spent 12 days at Mayo paying out of pocket with no diagnosis.This also does not include ER visits. No one can diagnose my illness.
Almost all my symptoms are “quiet “ at this time but some of them were in no particular order of occurrence:

Chest pain soreness along the bra line
Soreness in rib area/lung area (still current)
Difficulty breathing (this came from fluid in both lungs)
SVT’s
Extreme fatigue
Pain in calves/thighs
Have Graves’ disease since 18 with just maintenance (after August disease onset T3 T4 not normal)
Extreme inflammation through out entire body causing 2 times of draining fluid from both lungs
Fluid around my heart which was drained
Fevers
Total kidney failure (dialysis 4 months)
Swelling in lower stomach below belly button after eating
Interitis which required admission to hospital
Biopsy of kidneys revealed Minimal Change Disease (nephrologist said failure would not be caused by this)

I have been tested for everything- lupus (multiple times),RA, cancer, tumors, multiple MRI, PT, sonograms, xrays (I’m surprised I don’t glow in the dark). I have 2 three ring binders with hospital tests, information and discs of MRI’s, etc. Rheumatologist tested me for Mediterranean Fever but it was inconclusive.
I have been on plaquinil, prednisone all the way from 60 mg daily now currently taking 5 mg. Took as much as 1,000 mg twice intravenous during kidney episode. Prednisone is a savior and the devil. Took metropolol for my heart which has since cleared up. Colchicine which I am currently taking for the inflammation “seems” to be helping. Inflammation markers which I ask to be checked monthly are still elevated. Inflammation goes up and I get sick. I am also taking CBD oil. I have had anxiety my whole life and extreme stress in my recent life and the oil has been a godsend. My husband says I act like a normal person now. I take that as a compliment because I do feel much calmer.

I’m still trying to get my thyroid in line and get my stamina and strength back. We are considering the NIH for help in diagnosing this illness I have.
I’m sure I’m leaving something out. It has been a long road with no end in sight. I’m trying to listen to my body and take it easy.

Jump to this post

Have your doctor send your blood to Mayo Clinic Rochester to check for the antibodies for POTS and also for Autoimmune Encephalitis. They have blood panels they do for both. That’s what we did with my son. Then find a very good neurologist (teaching hospital?) and join Facebook pages for both those diseases. Lots of info on there and recommendations. Also watch YouTube videos for doctors that know about it. Don’t let anyone tell you that you have a problem like depression or hypochondriac. You know when you are sick. Also, take your mom with you! They tend to be not as rude and condescending when you have someone else in the room. Good luck and let us know how it goes.

REPLY
socalgirlntx | @socalgirlntx | Jan 15, 2020

Hi there. So sorry for your difficulties. I’m undiagnosed as well. However, my doctor did order an ANA with titer which came back with a high level of several autoimmune antibodies. Even though I have to wait about 6 months to get to see a rheumatologist, at least CB knowing my numbers (be sure to ask for a copy of the report and they have to give it to you). At least you’ll have a better idea if it’s autoimmune or not. Good luck. I hope you find some answers soon.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 17, 2020
In reply to @beanie300 "Hey everyone! just wanted to post an update. I did finally end up going to the..." + (show)
@beanie300

Hey everyone! just wanted to post an update. I did finally end up going to the Mayo clinic in Rochester after finally finding a doctor who would refer me so that my insurance would cover the visit. Unfortunately they were unable to be as extensive as they would have liked thanks to my insurance not wanting to work with them in a timely manner and me not being able to cover the costs myself. They were very nice there though! Did more testing in the two weeks I was there than most of my doctors have in two years and they even waived the fee on my last appointment to help me handle the cost!

I had a few labs come back abnormal for once which is probably a weird thing to be excited about but after years of doctors knowing I am sick (several times with physical symptoms they were actually able to see for themselves) but normal lab results so they couldn't figure it out, having abnormal lab results has me feeling hopeful for answers!

My vitamin D levels are low. They were an 8 when they tested, with an optimal range being between 20 and 50. They now have me taking 5000 ui of vitamin D for three months and at the end of that three months (which will be the end of this month!) I have to go in to my regular doctor to get those levels retested. If they come back abnormal again then I am supposed to get tested for Celiac disease. They already did the blood test for Celiac disease at mayo but that came back normal. The doctors at mayo told me about 10% of people with Celiac disease have a normal blood test and with all my symptoms, they weren't ready to rule it out until they see how my body absorbs these vitamin D supplements.

My cortisol levels also came back low. A 5 with a reference range of 7-25. I was told I should have been on the higher end of that reference range though because they ran the cortisol test first thing in the morning when my cortisol should have been at its highest. I am also getting my cortisol levels rechecked at the three month mark (the end of this month.) and if it comes back weird again, they will dig further into that.

They also tested my thyroid levels with a TSH test that came back high (4.6 with a ref range of 0.3 – 4.2) indicating I may have some kind of thyroid condition that they caught early. I was told they don't do any treatment however unless those levels come back at at least a 10 because otherwise the medication could hurt more than it would help. I am supposed to go get my thyroid levels retested at the 6 month mark (about 4 months from now) and again at the 12 month mark just to make sure my thyroid levels don't get worse.

A few other results came back a little off but the doctors didn't feel those results held any significance so I won't mention them here.

Additionally, my primary care doctor wanted me to get the sores in my mouth tested for herpes the next time I had an outbreak of 4 or more sores. Due to the circumstances in my life at the time I wasn't able to get that done for the first few outbreaks but I finally got it done. The test results were negative, so not herpes. If I do end up having Celiac Disease then I have been told it could be a symptom of it.

Unfortunately my regular doctor just retired so while dealing with all of this I also have to find a new doctor who will believe me, be helpful, and take my insurance. I have an appointment with what will hopefully be my new primary care doctor in a few days to establish care and get my levels retested.

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@beanie300 I wonder how you’ve been doing! Sounds like you were on the right track but then your regular doctor retired. Have you been able to find a new doctor and are things going ok?

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wiseowl | @wiseowl | Jan 23, 2020

I'm no doctor but if it were me I would look to a surgeon involved in the gastro.,most of immune system ,70% is in the gut,perhaps there are something going on in there! Good luck!

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 26, 2020
In reply to @socalgirlntx "Hello Group - I have recently had a positive ANA test with titer of 1:2560. I..." + (show)
@socalgirlntx

Hello Group - I have recently had a positive ANA test with titer of 1:2560. I am a 55 year-old woman. I have been referred to a rheumatologist but can only get on a waiting list at this point with a delay of at least six months. Very frustrating. My symptoms have been getting progressively worse over the last three years which caused my GP to finally order an ANA test. My quality of life is decreasing so the idea of waiting at least half a year for a diagnosis is daunting to say the least. I'm hoping to get some direction from anyone that is experiencing similar issues and may have more information because they're farther along in the medical process. I'm including any information that is out of the norm for my usual good health in the past.

I have lived with Grave's Disease for about 20 years. I responded well to anti-thyroid meds and only recently was put on synthetic thyroid because my thyroid has "burned out" which apparently is expected after overproducing thyroid for so long.

Most severe symptoms are as follows:
Chronic Dry Eye (I have tried Restasis with no improvement) - I have to use artificial tears about every 10-15 minutes. My visual clarity is really suffering. I'm a full-time student so this makes studying very difficult. The only relief I get is by using warm/moist compresses, but the relief is very short-lived. I'm really scared I will eventually lose my eyesight altogether.

Chronic Inflammation in the upper colon (colonoscopy about 8 months ago). This causes pain EVERY time I eat. I have also lost about 30 pounds over the last 3 years. I think I have subconsciously decreased my eating in order to avoid the pain that comes after eating. Although I rarely have much of an appetite. I tend to eat only because I know I'm supposed to.

Dry Mouth and clogged saliva glands near the back of my jaw. Usually when this happens, I can apply warm compresses and massage the area and it gets better within a few days. I also have to drink whenever I do eat anything because I'm not producing enough saliva.

Fatigue - I am really tired almost all the time. I am normally an active and healthy person, so this is really frustrating. Some of this fatigue may be related to difficulty in sleeping. I take a prescription to help, but it only helps me to fall asleep but not to stay asleep.

Muscle weakness - I have a significant decrease in the strength in my hands, arms and legs. I've gotten to where I can't even open a lid on a gatorade or juice bottle. Thank goodness my husband or son are usually close by. I also have been diagnosed as having some significant arthritis in the joints in my fingers shown in an x-ray.

Headaches and "Brain Fog" - Kind of strange headaches that are less generalized as far as where I feel them. These headaches are kind of spread all over and sometimes felt more on the top of my head as opposed to stress headaches that I feel at my temples. I also have much more difficulty being able to maintain clear thought processing and find myself mildly confused much of the time. This makes studying for school exceedingly difficult.

High Blood Pressure that resolved itself once I began thyroid replacement therapy.

Although not as distressing, but still an issue is mild hair loss. My hair is about half as thick as it used to be on my scalp. However I have lost almost all of my body hair (saves me from having to shave my legs! Ha ha) I'm not sure if this is related to age or if it's related to my more current health issues.

These are some specifics on blood tests. I'm only including items that are outside of what's considered "normal". Some are more significantly out of norm than others. I have no clue as to the significance.

ANA SCREEN - Positive with 1:2560 titer. High results for SSA-52 (294 AU/ml) SSA-60 (182 AU/ml) SSB (114 AU/ml) I had negative results for Double-Stranded DNA antibody, Smith Antibody, Jo-1 Antibody and Scleroderma antibody.Antinuclear Antiboy with HEp-2 substrate, IgG by TFA was detected (Ref Interval 1:80)

CBC with Auto Diff (Only listing out of Norm): Hemoglobin 11.9, Lymphs 0.9, MCHC 31.8, Neut Abs 1.5, WBC 2.8

METABOLIC PANEL - All within normal range

LIPID PROFILE - Cholesteral, Total was (147) and HDL was (34)

THYROID SCREENING - Thyroglobulin Ab (8,807.7) and Thyroid Peroxidase Ab (633) - I'm sure this is related to the Grave's Disease, but not sure if it could be related so I'm including the information.

I am not sure what's relevant, but have tried to include as much information as possible. I'm just hoping someone else may have experienced similar issues and might help me to at least gain a better understanding of the "big picture". I am certainly not expecting to get any type of a diagnosis. I would also be interested in supplements or dietary information that may alleviate some of the more pressing symptoms I am experiencing.

Thank you in advance.

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@socalgirlntx I think several of your symptoms may be thyroid related, the hair loss, loss of appetite, fatigue and weakness. I have Hashimoto's and take a desiccated pig thyroid pill called Naturethroid. There is also Armour Thyroid. My doctor told me that some patients cannot convert between the different components in thyroid medication, and the synthetic does not have all the components, but the natural pig thyroid does. You might ask to try this and see if it helps instead of the manufactured thyroid medication.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2020
In reply to @christina65 "I have been sick since Age 3. Thought it was CF for 13 years then told..." + (show)
@christina65

I have been sick since Age 3. Thought it was CF for 13 years then told no. Have antiphospholipid syndrome, extreme muscle pain in neck and shoulders and spreading through my body, lightheadedness, dizziness, extreme fatigue, light numbness throughout my whole left side. Doctors have no idea... Please help me. This has been 36 years of my life.

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Hello @christina65, Welcome to Connect. I know it has to be hard for you having been sick for so long with all of the different symptoms and not being able to find a treatment that helps. There is another similar discussion where your post will receive more visibility and you will be able to meet other members with similar symptoms and learn from their experiences. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion:

> Groups > Autoimmune Diseases > Autoimmune? Undiagnosed and don’t know where to go next
-- https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

There is also another discussion you may be interested in that shares many of the symptoms you listed.

> Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
-- https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Have you thought about getting a second opinion from a major teaching hospital or the Mayo Clinic? Mayo Clinic is really good at diagnosing hard to diagnose health conditions. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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