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beanie300
@beanie300

Posts: 5
Joined: Nov 07, 2018

Undiagnosed and don’t know where to go next

Posted by @beanie300, Wed, Nov 7 6:34pm

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.

REPLY

Hi @beanie300, welcome to Connect. I am sorry that you are going through so much at such a young age. There is a post I would like to share with you in the Women's Health Group by @predictable.

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/

The above post is the story of Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome. She also has a TED Talk – What happens when you have a disease doctors can't diagnose
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

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

@beanie300 are you currently taking any medications?

John

@johnbishop

Hi @beanie300, welcome to Connect. I am sorry that you are going through so much at such a young age. There is a post I would like to share with you in the Women's Health Group by @predictable.

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/

The above post is the story of Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome. She also has a TED Talk – What happens when you have a disease doctors can't diagnose
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

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

@beanie300 are you currently taking any medications?

John

Jump to this post

@johnbishop thank you for these resources. It is an option but my insurance will only cover it if my doctor sends me there. He was actually going to send me to the MN clinic for my POTS testing but they couldn’t see me for 6 months so my doctor sent me elsewhere instead.

I am on medications. I am currently on Bupropion for anxiety, Fluoxetine for depression, (been on both of those since about 16 so I am fairly certain they aren’t the cause of fatigue), Ranitidine and Cetirizine (antihistamines to help counteract the dermatographia and hives), and Hydroxyzine as needed to help supliment the other antihistamines. I only take that one like once or twice a month though when I am breaking out really bad.

@beanie300

@johnbishop thank you for these resources. It is an option but my insurance will only cover it if my doctor sends me there. He was actually going to send me to the MN clinic for my POTS testing but they couldn’t see me for 6 months so my doctor sent me elsewhere instead.

I am on medications. I am currently on Bupropion for anxiety, Fluoxetine for depression, (been on both of those since about 16 so I am fairly certain they aren’t the cause of fatigue), Ranitidine and Cetirizine (antihistamines to help counteract the dermatographia and hives), and Hydroxyzine as needed to help supliment the other antihistamines. I only take that one like once or twice a month though when I am breaking out really bad.

Jump to this post

Hi @beanie300, there is another active discussion that may be helpful for you to read through and meet others who may have some of the same symptoms.

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

John

I, too, had some unexplained symptoms—vomiting for no reason, until I became dehydrated and lost 30lbs. My voice was slurred and gait unsteady. I was sure I had a stoke (I’m 70) but no one would listen. Finally, when I was non-responsive, they gave me an MRI. And NO ONE knew what they were looking at! I was admitted but my husband continued to search for a good neurologist. I was diagnosed with Clippers disease at University of Colorado where I continue to get care. I really agree with John. Try to get to Mayo Clinic or the university medical center in your state

@becsbuddy

I, too, had some unexplained symptoms—vomiting for no reason, until I became dehydrated and lost 30lbs. My voice was slurred and gait unsteady. I was sure I had a stoke (I’m 70) but no one would listen. Finally, when I was non-responsive, they gave me an MRI. And NO ONE knew what they were looking at! I was admitted but my husband continued to search for a good neurologist. I was diagnosed with Clippers disease at University of Colorado where I continue to get care. I really agree with John. Try to get to Mayo Clinic or the university medical center in your state

Jump to this post

@becsbuddy welcome to Connect and thank you for sharing your story. I’m happy to hear you were able to find out what the diagnosis was and are getting treatment now.

Are you able to share anymore about your treatment and how it helps?

John

@johnbishop

@becsbuddy welcome to Connect and thank you for sharing your story. I’m happy to hear you were able to find out what the diagnosis was and are getting treatment now.

Are you able to share anymore about your treatment and how it helps?

John

Jump to this post

I currently take 2000mg of CellCept, having tapered off of steroids. I’m also getting “pulse” steroids of 1000 mg weekly via infusions. Actually, nothing works. I’ve been on the Fb Clippers support group and the feeling is that it’s all trial and error. I really want to get better! I worry for my husband who is taking care on me, the house, and a sick dog. Not much help, I’m afraid.

@becsbuddy

I currently take 2000mg of CellCept, having tapered off of steroids. I’m also getting “pulse” steroids of 1000 mg weekly via infusions. Actually, nothing works. I’ve been on the Fb Clippers support group and the feeling is that it’s all trial and error. I really want to get better! I worry for my husband who is taking care on me, the house, and a sick dog. Not much help, I’m afraid.

Jump to this post

@becsbuddy So sorry for what you have I found some info maybe interesting it is https://raredisease.info.nih.gov/diseases

@lioness

@becsbuddy So sorry for what you have I found some info maybe interesting it is https://raredisease.info.nih.gov/diseases

Jump to this post

I will definitely look up the article you mentioned! Thank you so much @103196 . Off for another steroid infusion!

@becsbuddy

I will definitely look up the article you mentioned! Thank you so much @103196 . Off for another steroid infusion!

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@becsbuddy your welcome let me know how your doing

@lioness

@becsbuddy your welcome let me know how your doing

Jump to this post

Sorry, Lioness @lioness , I read the paper, but will have to do so again. I’m now in the hospital with added confusion and unable gait. Good thing I’m not supposed to cook thanksgiving dinner! Becky

@mamacita GrandmaR parus everyone Happy Thanksgiving.

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.

@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

@jodyradney Wow you sure have been through alot Welcome to connect hopefully others will chime in ,we all try to give our information about we can I have some websites that maybe helpful http://www.WebMd.com,www.nccih.ncib.nih.gov One thing I take for my inflammation is Ginger-Tumeric tea Tumeric is anti inflammatory they have it in capsules but I have a touchy stomach so I drink the tea Amazon or Trader Joes is where you can find it Sorry I can't help anymore.

Liked by becsbuddy

@lioness

@jodyradney Wow you sure have been through alot Welcome to connect hopefully others will chime in ,we all try to give our information about we can I have some websites that maybe helpful http://www.WebMd.com,www.nccih.ncib.nih.gov One thing I take for my inflammation is Ginger-Tumeric tea Tumeric is anti inflammatory they have it in capsules but I have a touchy stomach so I drink the tea Amazon or Trader Joes is where you can find it Sorry I can't help anymore.

Jump to this post

Thank you—I’ll try!,

@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

'Go to NIH,Joyradney! Let all the expersrts look at you and share the information in one place! My sister and I both go to different university hospital s and are glad we do! Have run out if air for now so will sign off

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