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.

djfd | @djfd | Nov 12, 2019

Alot of your symptoms sound like me, including mono twice. I was misdiagnosed for over twenty years, finally got to internist after bad rash on face and felt like I was on fire, an er doctor said classic lupus. Internist said no, fibromyalgia and did not need rheumatologist. Finally was sent to hand surgeon because hand started looking like man's. He said I needed surgery but wouldn't do it until I was in care rheumatologist. Finally got into one after waiting another year on list( don't have many doctors in small hill country Texas town) and had to travel three hours one way but she was worth it. Spent hours with me Running tests, labs and exrays after going over full history. She was very understanding and acknowledged my frustrations. When she called me back into office two weeks later, had diagnosis of psoriatic arthritis (same thing as golfer on TV commercial but worse stage).

Please try going to a rheumatologist.

Becky, Volunteer Mentor | @becsbuddy | Nov 12, 2019

In reply to @heatherdoney74 "Thank you for the reply. I have a lyme test on the way. I've been thinking..." + (show)

@heatherdoney74 Welcome to Connect, an online support and information community. People can share their symptoms and hopefully get answers from others experiencing the same problems. We’re not physicians, but we try to share what has worked or not worked. Have you thought of going to a large medical center or university hospital/medical school? With all of these new diseases popping up, local doctors don’t seem to have the most recent knowledge. The local doctors in my town didn’t know what was going on with me, until they finally agreed to an MRI. Once the neurologist saw the MRI, he knew to give me intravenous steroids, but didn’t really know what else to do. My husband was able to get an appointment at the university medical center and I’ve been under their care since. Since breathing seems to be your biggest issue, you might want to see a pulmonologist at a medical center. Can you ask your doctor to refer you and send your medical records? Let me know what happens, please. I care. Becky

Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2019

In reply to @heatherdoney74 "I have been actively fighting something for over 4 months now, since June 22nd. I apologize..." + (show)

@heatherdoney74

I have been actively fighting something for over 4 months now, since June 22nd. I apologize for the lengthy symptoms list, but I am praying somebody out there has had something similar (in the past) and may know what direction to send me. I don't feel like I have much longer to figure it out as my condition worsens and I am unable to get out of bed for long periods of time. It started on June 22nd when I was driving home from Destin Florida. I started to feel nauseous and had pain in my left lower ribs/upper abdomen area. I pulled over a couple of times, but it kept coming back worse, I couldn't drive for more than a few minutes without breathing difficulty, got dizzy, broke out in sweat, seeing spots. I pulled over and my daughter came and got me and drove me 8 hours home. We thought it may be some kind of flu, symptoms continued, dizziness, nausea, breathing difficulty when trying to sit up, I slept for 16 hours a day for the first few days. The 3rd and 4th day, I started getting a right arm pain, tingling/numbness, could only eat a little bit of food at a time, pain moved around to upper stomach, lower lung area, very difficult to get a full breath in. I did not have chest pain except a on fire/burning pain that first day, but I was breaking out in cold sweats, so it could have been related. After a few more days with no change, my daughter decided to take me to the ER. They did a CT of abdomen and said everything was fine except a legion on left lobe of liver, but it was unrelated.They said I had GERD and sent me home with Prilosec for 10 days and follow up with primary care. Took Prilosec, no change, I had to get Meklizine because the dizziness was so bad I couldn't stand up. Got an appointment with primary care doctor who thought it was a hiatal hernia and sent me to a GI specialist. GI specialist thought hiatal hernia and scheduled an endoscopy. He also told me to take Sucralfate 1 GM tab 4x a day and Dexilant for 10 days. Endoscopy just showed gastritis and benign polyps, no hiatal hernia, so they said there was nothing more they could do. I am still having all of these symptoms, riding in a car is excruciating, like all of my organs are rolling around in my body loosely. Dizziness did subside some, nausea not as bad in the beginning and I could walk ok. Walking was actually making me feel la little better. GI specialist also thought it was muscle skeletal and would let my PCP know. He said I could take Tylenol or zantac if I wanted, but left it up to me. Weird..Back to PCP then thought it was superior messianic artery syndrome / SMAS), referred me to general surgeon to confirm and ordered a chest MRI to see if my diaphragm is torn. Sugeon said no to SMAS and MRI came back fine. PCP didn't know what else to do. I asked for a referral to a Pulmonologist since everything with this affects my ability to breathe, he said sure and come back in 6 months! Fastest Pulmonologist appt. was in 6 weeks. I took it. Since I was getting nowhere fast, I moved to a new PCP that specializes in Internal medicine. Met with the nurse of internal medicine and she ran autoimmune bloodwork as for another chest xray to see if I had cracked any ribs back in June. All came back fine. Got to Pulmonolgist last week and he thinks it Tietze syndrom so had me start prednisone for a week with an inhaler twice a day. I can no longer bend up and down or I get a lump in my mid stomach/abdomen causing severe pain and I have to lay in bed for days for it to get better. Just last week I am having episodes where my rt arm goes tingly then numb and heavy and I started crying uncontrollably and my body starts shaking uncontrollably. VERY embarrassing. I was at Sam's when this happened first and have been home the other two times. My daughter took me to the ER the third time it happened in a week because we thought it might be a stroke. ER did head CT said no stroke/heart attack. They gave me Potassium pills, a Valium, anti-nausea medicine, and pain medicine there. One of those or all of those meds blocked most of the pain that day and made the car ride home bearable, but they can't send it home with me.Currently since ER, I have heavy head and limbs, can't be out of bed for more than an hour at a time, my upper right chest burns into my rt shoulder and breathing is still difficult. I called the pulmonologist to let him know in case it was the prednisone. Just now he said to stop prednisone and take nexium for 6 weeks. I think I am back to square one. Hstorical information: The reason I think it could be LYME disease is this:
June 2016 bit by a tick above tailbone, right side. Did not think much of it, other than it was smaller than other ticks I have pulled off of me. Tick was gotten in Bell Florida, 30 miles west of Gainesville. No noticeable symptoms, got a sinus infection or bronchitis in the fall, around October, went to CareHere and was given an antibiotic, didn’t get rid of it so they gave me another antibiotic, near the end of the second antibiotic I started getting back pain, it kept getting worse and worse until I could barely get out of bed or stand up straight. I tried getting a visit with my Primary Asha Shaw, but she had no appointments available until the next day. They advised me to go to ER, I went to Sebastian River ER and the doctor said that I was probably constipated and he really couldn’t help unless I came back with a gunshot wound. I left the hospital in excruciating pain, barely got myself home and got into my doctor the next day. After examination, she diagnosed me with degenerative disc disease, put me on pain relievers (tramadol), muscle relaxers, and nerve pain blockers (gabapentin) and referred me to an Orthopedic Back Specialist. The first available was Dr. Kalman and I got in the following week. Turns out I had L4,L5, S1 Herniated discs and radiating out to my sciatic nerve. Medication help relieve some of the pain and started Physical Therapy 2 to 3 days a week. After being in therapy for weeks, I got a sharp pain in my hip that would not allow me to lift it up to get into my truck. Could barely drive, couldn’t sit down to the toilet with out assistance, bending was near impossible. PT told me to make an appointment with Dr. Hickman, hip specialist in the office. Went to see him, had an MRI done and it turns out that I have a degenerative tear in posterior hip, etc…. (also beginning arthritis); he says he can replace it or I can wait and see, I said I will wait and see and try to make it better.
Over time the hip got better.
During this time, pain escalated all over my entire body. It just kind of hurt to exist. It got better when I was on all the pain blockers, but was still subtly there. I also have been running a low-grade fever since all of this started 3 years ago. I take Tylenol every day so fever doesn’t register unless I take it before I take meds, but I have and still periodically check to see if it still there. My normal temp is 97.3, I typically run 99*, but it sometimes has been up to 101*, but I am not sick. I have literally been running a fever for over three years.
Also, the pain I have in my body since all of this started years ago has not gone away, just seems to hurt worse on certain days. Most of my doctors when trying to figure this out thought it was Lyme disease, then Lupus, the RA, they have tested for everything, negative.
However, after reading up on it, the Lyme test was given to me MONTHS after the bite. According to the internet, it doesn’t show up anymore after a few weeks. So, I have to wonder if I do have lyme disease and this is just another attack on a body system. There is more, but I cannot type any more right now. IF any of this sounds familiar please let me know. Thank you for your time.

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Hello @heatherdoney74,

I tend to agree with Becky's (@becsbuddy) suggestion that you have your records sent to a large medical center like Mayo or a university medical school. These types of medical centers tend to be multi-disciplinary, which means they have teams of doctors from different specialty areas who work together for hard-to-diagnose problems. Many of us on Connect have had hard-to-diagnose problems and have eventually found an answer. It does take determination and persistence. So please keep advocating for yourself and looking for answers.
Will you post again?

heatherdoney74 | @heatherdoney74 | Nov 12, 2019

In reply to @becsbuddy "@heatherdoney74 Welcome to Connect, an online support and information community. People can share their symptoms and..." + (show)

Thank you Becky. I am gathering all my now. None of the teaching med centers take my insurance, but I'm at the point now of doing whatever it takes to get somewhere that can help me. I have a pulmonologist who keeps changing his mind of what he thinks it is. He thought Tietzes syndrome, put me on steroids, then stopped mid week and told me to take medium for 6 weeks, wanted to check my chest wall and look for clots? Then maybe not. I have no clue what they are doing. Everyday something different. Here, if you tell the doctor's you want to go to somewhere like a Mayo clinic, they get really upset, so I am just gathering my scans and records and am going to try to get in to mayo or see if this is lyme and try a lyme specialty place. I have an mri tomorrow of my abdomen, so hoping if there is something around my lungs, they might see it. I have no idea what else to do and am exhausted just remembering what I have to do each day. Thank you for caring, I really do appreciate it. It's nice to know that someone out there does and this forum has given me a little hope and renewed my faith.

heatherdoney74 | @heatherdoney74 | Nov 12, 2019

In reply to @hopeful33250 "Hello @heatherdoney74, I tend to agree with Becky's (@becsbuddy) suggestion that you have your records sent..." + (show)

Thanks Teresa,
I did reply below to Becky, not sure how these posts work if you can see them all or not. I have an mri tomorrow and am collecting all my records to go somewhere like that. It's just time consuming and exhausting. I haven't been able to drive since june 22nd, so my daughter has to run me around getting everything and it is extremely difficult for me to ride in a car, nausea, major pain, horrible, so all is just taking some time. I appreciate the response and am grateful for this forum and all of you.

Sundance(RB) | @sundance6 | Nov 12, 2019

Heather Please know you are not alone! I know how the doctors treated me for the last year and a half! When I got upset and one of my neurologist he told me to take my file and go out of state! I'm in the same financial sitition you are in. I have dear friends in Phoenix who have told me to come stay with them and go to Mayo! But I can't afford it! I've given up on trying to prove it is Lyme Disease! There is no Cure!
But I have not given up on Life!
As I said before this has been the hardest year and a half I have had in 73 years.
I've had to give up on many things that brought me pleasure! Fishing, Golf, Sking to name a few! I work each day at giving Love and Freidship to everyone I come in contact with! The clerk at Office Depot today who couldn't get the register to spit out my recipet! Her name was Kayume! We talked about her and how her day was! Talked to the Special Lady who is my Silver Sneakers Yoga Instructor, she has a Special class for people like us for Balance! She invited me to her class in the morning.
I am a firm beliver that we are given Special Gifts that are meant to be! It depends how we listen and approach them. That is where I am now! I know how frustrated, confused and helpless you must feel! I have gone through it for the last year and a half!
As I said last night the Best thing you can do is to do what you are doing! Research, Research, and Research! You have found this site which has saved my Life! But there are many others and many people who can tell you what worked for them. Trail and Error on your part!
Please understand I am not being Negative!
I have learned that I am the only one who can help ME!
Learning to understand your limitations is #1! I cross that Red Line many times! When I do I know how I am going to feel and how I will suffer! But then it is up to me to put things back in order!
Most of this comes with age and trials!
My warmest Heart and Blessings go out to you!
I wish We had a Magic Wand we could wave and this would all go away!
My Thoughts and Blessings go out to you 100 fold!
Sundance(RB)

heatherdoney74 | @heatherdoney74 | Nov 13, 2019

In reply to @sundance6 "Heather Please know you are not alone! I know how the doctors treated me for the..." + (show)

@sundance6

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Thank you for your words of encouragement and empathy. I am going to tackle one day at a time. Today it was a minute at a time getting to and during an MRI, then 5 minutes, an hour, until it got better. I know better days will come. I will keep researching. I found a company that does an extensive lyme test, dna connexions, expensive, but the most reputable this far in my search. I am feeling my way along, thank you for making my day a little brighter and hopeful. Blessings right back to you! Hope you have a restful evening.

Sundance(RB) | @sundance6 | Nov 13, 2019

Lady, You are on the right path to Personal Healing! I aplude for your tenasity! Keep searching and diging! The answer will come! It may not always be the one we want but it will lead you in the right direction!
Did my first Flexability & Balance Class today!
Talk about feeling like a Fish out of Water! It took the class for me to ralize how much the disease had effected me! When all these people were standing on one leg, I had trouble maintaining my balance! But as I told our Angel Instructor the time was right to move to this next level of my healing!
Enjoy the Beautiful Moon tonight if you are in good weather!
It was clear and beautiful both today and tonight in the Land of Enchantment!
Sundance(RB)

arunpandeyco | @arunpandeyco | Nov 14, 2019

In reply to @becsbuddy "@hopeful33250 I just saw your message from December! Thank you for the info on Dr. Tobin...." + (show)

who are you seeing at University of Colorado. My daughter has been diagnosed with SFN. So far the only test that was negative was ACHR was a bit elevated - 0.06. She is being treated as idiopathic neuropathy and being treated with lyrica for pain management. I want to see if we can find someone who can try to further diagnose to see if we can determine underlying cause or if IVIG treatment might be suitable for her. She is only 21 and has been dealing with this for the last three years.

Becky, Volunteer Mentor | @becsbuddy | Nov 15, 2019

In reply to @arunpandeyco "who are you seeing at University of Colorado. My daughter has been diagnosed with SFN. So..." + (show)

@arunpandeyco Good morning. I’m so sorry that your daughter is so sick. I’m going to the neurology clinic at UCHealth, Anschutz Campus in Aurora. My husband just called the number for UCHealth and they found a doctor for us. Unfortunately, the doctor was doing a fellowship so has now moved on. 😢 I have a new one whom I’ve not met because she’s on maternity leave! There is also a doctor in Denver who specializes in autoimmune. I was just hunting around on the computer and found her (can’t remember her name). I never called her because I was doing ok. We have really liked the neuro-immunology clinic at UCHealth. All the doctors are good. Please let me know what happens and I’ll look for the doctor’s name again. Will you?

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