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

@julienned Welcome to connect where we all care about each other We aren't Dr,s but I wanted to ask about you pain in your ribs and hard to breath Have you seen a lung Dr. ? The reason I ask is there is a condition called pleurisy that sounds like what you describe .

@astaingegerdm How has your daughter been doing? I’m sure it’s nice to have her at home, but you want her to get her independence. Do you think she’ll worry about you (when she moves out) as much as you’ll worry about her?!

Hi @becsbuddy and @lioness

I have been experiencing symptoms for 9 months, however there have been several "red herrings" if you will--they believe I had mono at the start of it all, even though I had it already, and I also had staph in my lungs during this. I have seen several pulmonologists and they do not believe my symptoms are lung related. I do have some mild inflamation in the lungs, but I was told this is likely to be asthma and I have been prescribed three inhalers, two nasal sprays, and one pill. None of those have made a difference. However, I have recently gotten some relief from gastroenterology at Mayo. I saw a local gastroenterology who, without examining me, told me that this was all in my head. Luckily, I was fortunate enough to see Gastroenterology at Mayo and they found a pelvic floor disorder, specifically the anal sphincter not relaxing. I got into a pelvic floor pt program ans it has really helped with my abdominal pain and shortness of breath. I have also found a new gastroenterologist at home, and he thinks functional dyspepsia may also be at play. Although I have many other symptoms, any relief is welcomed! I also am returning to Mayo next week and they will be repeating a lot of the gastroenterology tests that I had performed locally.

Julianne

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.

Hello @heatherdoney74, Welcome to Connect. I know it can be quite discouraging seeing so many doctors and not being able to get a diagnosis and treatment that helps. I'm glad you are searching for answers and learning as much as you can about your condition. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where it will receive more visibility and you will meet others who talking about Lyme disease.

> Groups > Autoimmune Diseases > Lyme Disease
-- https://connect.mayoclinic.org/discussion/lyme-disease-1/

Have you thought about getting a second opinion at a large teaching hospital or at Mayo Clinic where a team of different specialists work together to diagnose your condition?

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.

Hi John,
Thank you for the reply. I have talked with mayo and other teaching hospitals. None take my insurance so I am trying to apply for financial assistance and I am gathering all of my radiology reports. Mayo did say that if it is lyme, I would have to go to MN. I live in Florida and traveling 1 mile in a car is difficult at this point. I have ordered an extensive lyme test from DNA connexions, so I am hoping forndirectuon after that. I am only 45 so this is just crazy to me that I am almost incapacitated. Anything you think might help, I will do. Thanks for sharing!

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.

@heatherdoney74 I’m so sorry you are going through this. I have had many of the symptoms you have described but not all. I have Sjogrens Syndrome, Lupus, Myasthenia Gravis and Rheumatoid Arthritis. The debilitating pain is so awful and people who don’t have it don’t understand. Hang in there and don’t give up fighting for answers. After the birth of my three children and going thru menopause the last three years have been the absolute worse and most painful times for me. Seems like hormonal changes have played a big role in affecting my diseases. Start documenting everything and make a three ring binder of your different doctor visits. Call and get copies of the office visits and put in your binder. Do whatever you can to get to Mayo Clinic. I have gone to the one in Rochester and I’m sure they can get to the root of your issues and figure out how to manage your pain. I know you feel like you can’t go but try to.-see if a fam member could go with you. I fought my hardest to get up every day. I was either going to be in pain in bed or in pain doing what I needed to do. Either way, I was in pain. Drink lots of water, stay away from artificial sweeteners. Caffeine triggers migraines for me. Are you vitamin deficient-has your PCP checked that? What’s your GFR (kidney functions)? I had trouble breathing that kept getting worse and it ended up being acute kidney failure. Keep fighting for answers. Praying for you.