1. < Autoimmune Diseases

Possible Autoimmune…undiagnosed

Posted by melissawolfe1981 @melissawolfe1981, Jul 7 9:54am

So I have been seeing a new dr & after only 2 appointments, he say it’s depression/anxiety. In December 2021, I ended up with a virus. Went to the ER & both Covid & Flu test were negative. In June/July of 2022 I noticed I was more fatigued & having more headaches than usual. I put it off as working a lot. The. In September of 2022 I had to go to the ER because of head pains, lower back pain & chills that would not go away. All tests were normal. A few days later I went to an urgent care which prescribed some medications with no diagnosis. Found a dr who prescribed quite a few meds & said it was migraines. Migraine meds did not work. Here is when more issues started to show up out of nowhere….muscle weakness, vision issues, balance issues, head pains only on the left side, shooting pains in legs along with tingling in feet, lightheaded when standing up, tremors, the fatigue from doing tasks I used to be able to do normally & the list goes on. I went to 2 neurologists both of who didn’t run tests & again said migraines. One prescribed seizure medication & the other prescribed migraine shots. Neither of these meds worked. Found another dr who ordered lab work all which were normal but she thought it could be an autoimmune disease. My insurance changed so I wasn’t able to see her & I found another dr. He also had a complete lab work up done…all labs normal except the EBV which was high. He said it wasn’t concerning because it was from a prior infection. I explained to him I didn’t want meds prescribed to me on what he thinks that I need to find out what is wrong first because it’s been 2 years of living like this. The only 2 appointments I’ve had with him, he has described his situation with being diagnosed with depression/ anxiety. I also have bulged discs in my neck & when I asked him if that could be causing some of my issues he stated that he has bulged discs in his neck & he doesn’t have issues. I asked to be referred to a rheumatologist or someone who could look further into my health issues & was told “no specialist will see me with normal labs”. His suggestion is I have depression/anxiety which I’ve never had before all because he woke up one day with depression/anxiety. I’m not sad or hopeless just frustrated that I know something is wrong with my body. I’ve even looked into ME/CFS & asked him if maybe the virus I had in 2021 could be the cause of this. Still received the same answer….no. Any ideas or suggestions would be greatly appreciated because I don’t know where else to go or what to do. I’m 43 & have always been healthy until 41, I’ve always worked & enjoyed life. Thank you for taking the time to read this🌻

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samcal9977zz | @samcal9977zz | Jul 19 9:08am
In reply to @becsbuddy "@zenalucy @mimsymode @samcal9977zz @bestgrammy @carolinlv @melissawolfe1981 @akelley @artemis1886 @sommerreign @lowrymal50 @ke01789 @ ikrinbauer. @taosmary I thought..." + (show)
@becsbuddy

@zenalucy @mimsymode @samcal9977zz @bestgrammy @carolinlv @melissawolfe1981 @akelley @artemis1886 @sommerreign @lowrymal50 @ke01789 @ ikrinbauer. @taosmary I thought I’d give everyone this info at the same time. Most of you are upset with your doctors (or lack thereof), are tired of being brushed off as anxious, and just, generally, being p….off. So I have some resources for you.
These sites have information on autoimmune diseases and the doctors who specialize in them.
GARD. The Genetic and Rare Disease organization. https://rarediseases.info.nih.gov/
NORD the National Organization for Rare Diseases. https://rarediseases.org/
Hospitals:
Comprehensive Medical Centers: in or near larger cities, have physicians in all health categories
University or teaching hospitals: include research facilities; will probably see residents and interns first, but the more experienced MD’s are supervising
The Mayo Clinic Health System: available in 3 mid-west states. . https://www.mayoclinichealthsystem.org/?
The Mayo Clinic Care Network: https://mayoclinic.org/about-mayo-clinic/care-network/network-members around the country and international
website if you wish to try to get an appointment: http://mayocl.in/1mtmR63

But, please, I ask you, use your words more carefully. When new members come, the negative words about doctors and hospitals, will really put them off and they will feel that there is no hope for them. All of you have such great tips and information—LET’S SHARE IT!!

Jump to this post

Thanks so very very much for the information!

Very much appreciated!

REPLY
bestgrammy | @bestgrammy | Jul 19 6:32pm
In reply to @becsbuddy "@zenalucy @mimsymode @samcal9977zz @bestgrammy @carolinlv @melissawolfe1981 @akelley @artemis1886 @sommerreign @lowrymal50 @ke01789 @ ikrinbauer. @taosmary I thought..." + (show)
@becsbuddy

@zenalucy @mimsymode @samcal9977zz @bestgrammy @carolinlv @melissawolfe1981 @akelley @artemis1886 @sommerreign @lowrymal50 @ke01789 @ ikrinbauer. @taosmary I thought I’d give everyone this info at the same time. Most of you are upset with your doctors (or lack thereof), are tired of being brushed off as anxious, and just, generally, being p….off. So I have some resources for you.
These sites have information on autoimmune diseases and the doctors who specialize in them.
GARD. The Genetic and Rare Disease organization. https://rarediseases.info.nih.gov/
NORD the National Organization for Rare Diseases. https://rarediseases.org/
Hospitals:
Comprehensive Medical Centers: in or near larger cities, have physicians in all health categories
University or teaching hospitals: include research facilities; will probably see residents and interns first, but the more experienced MD’s are supervising
The Mayo Clinic Health System: available in 3 mid-west states. . https://www.mayoclinichealthsystem.org/?
The Mayo Clinic Care Network: https://mayoclinic.org/about-mayo-clinic/care-network/network-members around the country and international
website if you wish to try to get an appointment: http://mayocl.in/1mtmR63

But, please, I ask you, use your words more carefully. When new members come, the negative words about doctors and hospitals, will really put them off and they will feel that there is no hope for them. All of you have such great tips and information—LET’S SHARE IT!!

Jump to this post

Thank you.

REPLY
artemis1886 | @artemis1886 | Jul 20 9:32am

The EBV is more than just the kissing disease or mono. Mine has been raised for over four years. When active I feel like I have the flu and my lymph nodes swell. My head will hurt really bad plus general malaise. There is other test than the common EBV to see if the antigens are currently active. My family doctor ran mine and said you had mono at some point I told him no it’s more than just the kissing disease. He looked it up in front of me and said you’re right and apologized to me. That’s when additional testing got done on the EBV it can become active randomly like if you had a stressful situation or if you don’t get enough sleep. Several things can reactivate it. Try asking him to do additional testing on the EBV when you are feeling like this. I hope it helps. My family doctor sent me to an immunologist and a rheumatologist. If your primary care doctor will not refer you ask your ob/gyn if you see one. My ob/gyn caught it to begin with she test for it when you have your yearly exam. Then I asked my family doctor to retest for it. Just some thoughts to help you out. My labs used to be normal when I was referred to a rheumatologist he did additional testing found out my labs are not okay. A rheumatologist it feels like takes 15 tubes of blood (quit counting after 10) but they test for a lot more than a family doctor. If you like your family doctor try seeing a different doctor get the referral and then go back to your doctor if you feel like he is not listening to you. Please understand I am not recommending you change doctors. I am just trying to give you ideas on how to possibly get a referral to a rheumatologist or whatever doctor you want to see for further testing. I read up and found Dr Anne Oaklander she gave me a bunch of labs to have ran before I saw her in Boston. I live in Texas.. I went to her for answers and found them. If you would like a copy of those requested labs I still have a copy. Take them to your doctor and request they be ran. This is strictly up to you. Just some ideas.

REPLY
1 reply
elisabeth007 | @elisabeth007 | Jul 20 8:03pm
In reply to @becsbuddy "@zenalucy @mimsymode @samcal9977zz @bestgrammy @carolinlv @melissawolfe1981 @akelley @artemis1886 @sommerreign @lowrymal50 @ke01789 @ ikrinbauer. @taosmary I thought..." + (show)
@becsbuddy

@zenalucy @mimsymode @samcal9977zz @bestgrammy @carolinlv @melissawolfe1981 @akelley @artemis1886 @sommerreign @lowrymal50 @ke01789 @ ikrinbauer. @taosmary I thought I’d give everyone this info at the same time. Most of you are upset with your doctors (or lack thereof), are tired of being brushed off as anxious, and just, generally, being p….off. So I have some resources for you.
These sites have information on autoimmune diseases and the doctors who specialize in them.
GARD. The Genetic and Rare Disease organization. https://rarediseases.info.nih.gov/
NORD the National Organization for Rare Diseases. https://rarediseases.org/
Hospitals:
Comprehensive Medical Centers: in or near larger cities, have physicians in all health categories
University or teaching hospitals: include research facilities; will probably see residents and interns first, but the more experienced MD’s are supervising
The Mayo Clinic Health System: available in 3 mid-west states. . https://www.mayoclinichealthsystem.org/?
The Mayo Clinic Care Network: https://mayoclinic.org/about-mayo-clinic/care-network/network-members around the country and international
website if you wish to try to get an appointment: http://mayocl.in/1mtmR63

But, please, I ask you, use your words more carefully. When new members come, the negative words about doctors and hospitals, will really put them off and they will feel that there is no hope for them. All of you have such great tips and information—LET’S SHARE IT!!

Jump to this post

Thanks Becky. i am grateful to have excellent competent Drs who express deep concern about me and try to help me understand that various of my conditions are “multifactorial” and extremely difficult to completely diagnose.

REPLY
melissawolfe1981 | @melissawolfe1981 | Jul 20 8:22pm
In reply to @artemis1886 "The EBV is more than just the kissing disease or mono. Mine has been raised for..." + (show)
@artemis1886

The EBV is more than just the kissing disease or mono. Mine has been raised for over four years. When active I feel like I have the flu and my lymph nodes swell. My head will hurt really bad plus general malaise. There is other test than the common EBV to see if the antigens are currently active. My family doctor ran mine and said you had mono at some point I told him no it’s more than just the kissing disease. He looked it up in front of me and said you’re right and apologized to me. That’s when additional testing got done on the EBV it can become active randomly like if you had a stressful situation or if you don’t get enough sleep. Several things can reactivate it. Try asking him to do additional testing on the EBV when you are feeling like this. I hope it helps. My family doctor sent me to an immunologist and a rheumatologist. If your primary care doctor will not refer you ask your ob/gyn if you see one. My ob/gyn caught it to begin with she test for it when you have your yearly exam. Then I asked my family doctor to retest for it. Just some thoughts to help you out. My labs used to be normal when I was referred to a rheumatologist he did additional testing found out my labs are not okay. A rheumatologist it feels like takes 15 tubes of blood (quit counting after 10) but they test for a lot more than a family doctor. If you like your family doctor try seeing a different doctor get the referral and then go back to your doctor if you feel like he is not listening to you. Please understand I am not recommending you change doctors. I am just trying to give you ideas on how to possibly get a referral to a rheumatologist or whatever doctor you want to see for further testing. I read up and found Dr Anne Oaklander she gave me a bunch of labs to have ran before I saw her in Boston. I live in Texas.. I went to her for answers and found them. If you would like a copy of those requested labs I still have a copy. Take them to your doctor and request they be ran. This is strictly up to you. Just some ideas.

Jump to this post

Thank you for this🌻 I’m so glad you have a dr that listens to you. I tried to explain the research on EBV to mine & he disregards it I’m assuming because I’m not a dr. Update which is a little chaotic…I agreed to the prescription of Effexor he so badly wants me to take & he was beyond excited that I agreed. In exchange I told him I wanted to be referred to a rheumatologist, immunologist & a psychiatrist. His happiness went away & he became quiet for a moment. He did send referrals to the specialists but they were to ones not covered by my insurance so I had to find specialists that accept my insurance, send the drs office an email with the info of the specialists & now wait for the referrals. Frustrating but at least I’m making som progress🌻

REPLY
1 reply
artemis1886 | @artemis1886 | Jul 20 8:34pm
In reply to @melissawolfe1981 "Thank you for this🌻 I’m so glad you have a dr that listens to you. I..." + (show)
@melissawolfe1981

Thank you for this🌻 I’m so glad you have a dr that listens to you. I tried to explain the research on EBV to mine & he disregards it I’m assuming because I’m not a dr. Update which is a little chaotic…I agreed to the prescription of Effexor he so badly wants me to take & he was beyond excited that I agreed. In exchange I told him I wanted to be referred to a rheumatologist, immunologist & a psychiatrist. His happiness went away & he became quiet for a moment. He did send referrals to the specialists but they were to ones not covered by my insurance so I had to find specialists that accept my insurance, send the drs office an email with the info of the specialists & now wait for the referrals. Frustrating but at least I’m making som progress🌻

Jump to this post

They recommended that I take Effexor but I have seizures and tremors from the motor neuropathy and in interacts with four of my other prescriptions.
I wish you good luck finding a doctor that listens makes all the difference in the world.

REPLY
carolinlv | @carolinlv | Jul 23 9:09pm
In reply to @bestgrammy "Hi Carolyn, thanks for replying. Yes, she did offer some ideas on what I could do...." + (show)
@bestgrammy

Hi Carolyn, thanks for replying. Yes, she did offer some ideas on what I could do. I live in the middle of Colorado and there is a really good dr. in Boulder, CO. that helps people with Anxiety. I have reached out to chat with him to see what it entails. I don’t like to plan much either because I do bail at the last minute. I hate when I do that. I am a Christian and know and believe that God can heal me. I get confused on why do I need medication when I have the Great Physician for my Father, but I still do take it. I am so glad to hear you are a Christian. Let’s pray for each other and ask Jesus to touch us and heal us. Sound ok? Well, almost bedtime. Good night and God bless. Sheila

Jump to this post

🙏🏻🙏🏻❤️

REPLY
lgrec | @lgrec | Jul 24 6:05pm

I would definitely have your thyroids checked. I had crippling fatigue and pain in the last 4 years and found I have hypothyroidism. I also had a MRI on my lower back and they found tumors in my uterus….and because of that and other tests done I got a total hysterectomy. Found out I had Adenomyosis and Leiomyoma’s which are benign fibroid like issues which can throw off your hormones. The day I work up from my hysterectomy I felt the cloud and brain fog had lifted. So get thyroid and hormones checked because they control everything! Side note: I noticed I have Plantar Fasciitis for the first time after my surgery that’s because my body is not making estrogen. So symptoms that you don’t think can be connected actually can.

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