1. < Autoimmune Diseases

Seeking Help for Unknown Medical Issue

Posted by Amy @ajidzior, Jun 25, 2022

I had mono 8/2019, really bad Covid 3/2020, and my 2 Moderna shots in January & March 2021. Since May 2021 I have been physically and mentally tired. Then Mother's Day 2022 I just physically and mentally crashed. I need someone with me all the time and I cannot drive. I want my life back and really want to teach again this fall. I missed the last month of school and was devastated. I am a happy, outgoing, positive person. I was a runner before Covid and enjoy boating and camping in the summer. Now I just sit home and try to feel better while I wait for the next test or doctor. I do practice yoga, meditation, positive music, painting, spirituality, etc. I am trying to see if anyone else has had experience with any of this for ideas of what to do next.

I have seen many specialists (endocrinologist, ENT, ophthalmologist, cardiologist, rheumatologist) and they all agree I have a systemic issue but they cannot figure out what. Virus, long Covid, autoimmune? My symptoms that only started 2 months ago are: episcleritis, blurred vision, intense tinnitus, mild/moderate hearing loss, tooth pain, inflammatory arthritis in my hands/feet/left jaw, painful/tight tendons in hands/feet, PVCs controlled with a beta blocker, difficulty breathing with sleep apnea that requires a CPAP machine, muscle weakness, dry skin with a rash on and off, and extreme fatigue. I changed my diet to paleo/anti-inflammatory and started seeing a homeopathic doctor as well. No blood tests, urine tests, MRI or CT have shown anything blaring. I reached out to Mayo Clinic and the demand is too great to take my case at this time. Any suggestions are appreciated.

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Amy | @ajidzior | Jun 30, 2022
In reply to @upartist "Hi Amy. I am not a mentor, but my heart goes out to you! It appears..." + (show)
@upartist

Hi Amy. I am not a mentor, but my heart goes out to you! It appears that your immune system got overwhelmed with 2 huge back to back viruses. Your body is fighting off the ongoing covid fallout after having your infection fighting spleen abilities reduced from the mono. There are long covid programs being created at various medical/research institutions. You clearly need a comprehensive approach. Maybe the mentors could direct you to one close by. Covid attacks every system of the body, so a program which is set up to recognize this might be a good choice. Your body needs rest, but that includes mild movement. As a runner, you likely have a tendency to push yourself hard. This would be the time to carefully titrate your excursion, and build in lots of rest and nutrition; maybe consider smaller increments, smaller goals. Dont go for where you left off. This is all new..... even for the treating physicians. I hope you can find resolution and freedom from the pain and fatigue...... both emotionally and physically.
UP Artist

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I really think Covid has something to do with it for sure. I would love to know where to go for long Covid support. Unfortunately when I got it, there were only 250 tests available a day in Michigan and I was a healthy person just before so I didn't qualify. I was told over the phone they thought I had it and to just stay home 2 weeks. I was on a list to be admitted if I couldn't walk across a room. I had a friend who had oxygen, inhalers, breathing treatments and I did YouTube videos to keep my lungs expanded. Without having a positive PCR test (there were no home tests back then) I don't qualify for the research or support that is going on now. It's crazy to me how getting it that early makes me not get help now. If you hear of any place taking people who just have data in their doctor's chart let me know.

Thank you for your input and support!

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Amy | @ajidzior | Jun 30, 2022
In reply to @marilynredder2367 "Same symptoms. Just minus Covid and add PMR and GCA. But all the rest is me...." + (show)
@marilynredder2367

Same symptoms. Just minus Covid and add PMR and GCA. But all the rest is me. Blood pressure uncontrolled even on beta blockers. If you find an answer let me know. Sorry I cannot be of any help.
Marilyn.

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I'm so sorry because this is a terrible way to feel. If I get any good answers I will update you for sure and please do the same! Hang in there. <3

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Amy | @ajidzior | Jun 30, 2022
In reply to @pacer3702 "The timeline indicates the precipitating factor for your illness could have been the vaccines. The symptoms..." + (show)
@pacer3702

The timeline indicates the precipitating factor for your illness could have been the vaccines. The symptoms and etiology of vaccine long-haulers resemble those of Covid long-haulers. I agree with the recommendation to see a neurologist. In addition to the symptoms that suggest autonomic dysfunction, the tight tendons in your feet could be neurological. The first symptom of my vaccine injury was tightness in my feet and calves and muscle spasms in my feet These were later confirmed to be neurological. You can learn more about vaccine injuries by joining the Neuro V Long-Haulers Facebook group.

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Thank you for the information! I just joined the group on FB. I just started seeing a great neurologist and I am hoping for answers.

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Amy | @ajidzior | Jun 30, 2022
In reply to @jedikaiti "You mentioned that bloodwork hasn't shown anything glaringly obvious, but what have they tested for? Someone..." + (show)
@jedikaiti

You mentioned that bloodwork hasn't shown anything glaringly obvious, but what have they tested for? Someone else asked about Lyme Disease - I second that. Also, have they looked for Anti-Nuclear Antibodies? Their presence could indicate an autoimmune disorder, although their absence doesn't necessarily rule it out.

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I have been tested for a ton of things including Lyme Disease. My ANA was within range. I did just have my 24 hour urine test come back showing a potential adrenal gland issue. I see my endocrinologist on Tuesday. My labs also show mild/potential issues with my kidneys. I have not seen that type of specialists yet but will look into it after the long holiday weekend.

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Amy | @ajidzior | Jun 30, 2022
In reply to @anniemaggie "I was diagnosed with fibro in 1984. Then looked for a Neuro to tell me that..." + (show)
@anniemaggie

I was diagnosed with fibro in 1984. Then looked for a Neuro to tell me that I knew I had ms, finally in 2000 got diagnosed after looking for 16 yrs. Had moved a bit. Tried to reach out to him found out he had died of cancer, so sad. He was world famous in adult MS & children's neuro diseases. I never knew. I have sjogrens, had a lip biopsy. Lost almost all my teeth, it is my primary disease as it can rupture your organs, most don't know that! I have 4 rare diseases. I have never been depressed. I feel most have worse problems then me. Also extreme bad back issues, see a DO Dr who does gentle OMT's that relaxes the mucsles, feels like a massage after 20 mins. Insurance pays.

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My Sjogrens came back negative but can it be like MS where it takes a while to show up in testing? I feel like I have the symptoms of so many things but nothing solid comes back.

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2 replies
Amy | @ajidzior | Jun 30, 2022
In reply to @moylandavis "Here is what I take. The pic with the melatonin is what I take at night,..." + (show)
@moylandavis

Here is what I take. The pic with the melatonin is what I take at night, the other is what I take in the morning. The only prescription is for cholesterol.

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Thank you!

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chris47 | @chris47 | Jun 30, 2022
In reply to @ajidzior "Thank you! I will look into those tests. I'm down to the point that I just..." + (show)
@ajidzior

Thank you! I will look into those tests.

I'm down to the point that I just do gentle yoga and I walk barefoot in my backyard to be grounded. I walked an 8K in April and came home exhausted. Crazy how different it is now. I appreciate the ideas and support!

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Amy -
While watching a TV show last week I learned an important lesson. Boiled down, it is basically this: once a major change has happened in a partners health, measure your partner on their new reality and not on their old reality!
In a relationship, a failure to acknowledge their new reality can be a serious problem that can ruin the relationship.

What does that have to do with the person who has had that major health change?

Accept your new reality and the new limitations the new reality imposes.

In my case, it has only taken 30 difficult years - but I decided after seeing this TV show that I will no longer be the victim of my multiple CD related autoimmune diseases. And that I will get about living no matter how many years I have left but within the limits of my reality will allow! 30 years is a long time! But late is still better than not at all!
Chris47 -

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1 reply
robyn | @boltz7555 | Jul 1, 2022
In reply to @ajidzior "My neurologist is awesome and I just had an MRI today. My rheumotologist is not so..." + (show)
@ajidzior

My neurologist is awesome and I just had an MRI today. My rheumotologist is not so great but at least did the basic tests for Sjogren's, Lupus, MS, etc. I am able to get into a better one in September so that will be nice. I think the Epstein-Barr and Covid combo really messed me up. Plus non-stop stress the last 3 years.

I really appreciate your ideas and support!

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@ajidzior I’m glad to hear you have a good neurologist! Sounds like EB+COVID really took its toll. I know what you mean about the stress. It definitely compounds the issues. I also divorced in 2020. Sometimes it’s all just a lot to handle. Hang in there and keep us posted on your MRI results.

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1 reply
Amy | @ajidzior | Jul 1, 2022
In reply to @boltz7555 "@ajidzior I’m glad to hear you have a good neurologist! Sounds like EB+COVID really took its..." + (show)
@boltz7555

@ajidzior I’m glad to hear you have a good neurologist! Sounds like EB+COVID really took its toll. I know what you mean about the stress. It definitely compounds the issues. I also divorced in 2020. Sometimes it’s all just a lot to handle. Hang in there and keep us posted on your MRI results.

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Interesting that we both got divorced in 2020. Well, mine was finalized in January 2021 but I left in Feb 2020 after 24 years. I'm all set to live free and happy so I am trying now the best I can and looking forward to my future.

The MRI showed nothing other than some issues that I need physical therapy for. They did not do the kidney/adrenal scan though so after I see my endocrinologist that might be ordered. I'm ok with labeling it long Covid or anything else, I just want to make sure I don't miss some big time bomb. Then I'll go on and do all I can with my new reality by helping my body but enjoying this life.

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oldkarl | @oldkarl | Jul 5, 2022
In reply to @ajidzior "Thank you so much! I will look into that. I appreciate the support." + (show)
@ajidzior

Thank you so much! I will look into that. I appreciate the support.

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@ajidzior Amy, a couple things. Looks as if you are keeping good records and diaries, so keep it up. Second, sign in to OMIM.org (Online Mendelian.....) Enter by your worst issues, and track their reports. This will not pin down the cause(s), but should give you some ideas. Then do the same with HPO.org, (Human Phenotype.....) Then go to one of the better genetics labs, such as Sequencing.com, Nebula Genetics, GeneDX, etc. and get their report, either of an assay (1% of the whole genome) or a whole genome. Sequencing.com or Ambry Genetics may be the least expensive at the moment. Then, if you can, ask your family for any odd diseases or symptoms such as diabetes, Crohn, Myeloma (most likely), etc. Get a genetics counselor to help you sort it out. There are many Myeloma types which present themselves with the symptoms and signs you name, such as fatigue, tooth pain, eye pain, cardiomyopathy, slow-developing cancers of internal organs, etc. Finally, don't rush too much. And if your doctor is not at least as curious as you about your situation, change doctors. oldkarl

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