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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jedikaiti | @jedikaiti | Jun 27, 2022

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 28, 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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Good tips, Jedi.

@ajidzior, here's more information about antinuclear antibody (ANA) testing from Mayo Clinic:
- ANA test https://www.mayoclinic.org/tests-procedures/ana-test/about/pac-20385204

@jedikaiti, can you share more about your experience with ANA testing and how it helped with your diagnosis?

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Kay Rovik | @anniemaggie | Jun 29, 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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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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Kay Rovik | @anniemaggie | Jun 29, 2022

I have seen so many specialists & had so many tests over the years. I have found if you eat a healthy diet & stay away from fad diets you are better off. Also try to listen to what the drs say not what non medical people who think they have an opinion but just get you more wrapped up. You can get too overworked worrying about all your health issues. All my Drs think I have some things but with auto immunes its hard to be sure. 10 yrs ago an eye Dr told me she thought they would figure out what was wrong with me in 10 yrs, they haven't. My neuro prescribed a med for my essential tremor only in my hands sometimes & I was falling down all the time for over a year. A hospital Dr took me off of all of it, turns out its a drug for many uses, one is it lowers your blood pressure! I also have ehlers-danlos, I have the only one that is not genetic, the rest are genetic arthritis. Mine is my joints are lax. It also can cause your organs to rupture. But worrying about what can happen, is not worth my time. I have other things to do. I ignored the fibromyalgia for many yrs because of the ms, sjogrens, lupus(not active), ms so sure the fibro hurts but other things more like my back!

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Amy | @ajidzior | Jun 30, 2022
In reply to @johnbishop "Hi Amy @ajidzior, I would like to add my welcome to Connect along with Becky @becsbuddy...." + (show)
@johnbishop

Hi Amy @ajidzior, I would like to add my welcome to Connect along with Becky @becsbuddy. You mentioned being physically and mentally tired and I was wondering if your symptoms sound similar to those in this discussion -- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

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That is so sad but also helpful. Thank you!

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Amy | @ajidzior | Jun 30, 2022
In reply to @gingerw "@ajidzior Me three for adding my welcome to Mayo Clinic Connect. What a mess to be..." + (show)
@gingerw

@ajidzior Me three for adding my welcome to Mayo Clinic Connect.

What a mess to be in, and have no answers. That certainly doesn't make your daily life any easier on you, does it?
If you haven't kept a journal of your symptoms, doctor visits, proposed diagnoses, medications, now is a good time to do that. Do you see a pattern? Are symptoms worse given a day of the week, or activities?

Have you considered any of the following:
-Did you move or change work location in the the time period since August 2019? Is it possible there is a causant factor in a new environment? Thinking about mold toxicity or asbestos or lead poisoning here.
-Do you camp or get out into the woods? Have you been tested for Lyme disease?
-Have you considered the services of a environmental or functional medicine doctor, to look at all the things that may be contributing to your symptoms?

These thoughts are what came to mind as i read your post. There are so many people here on Connect, someone may have a similar situation and will jump in to support you, also. Good luck and please post if we can help further, or when you get further along in your investigation!
Ginger

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Those are all great ideas. My daughter is a pre-med student and scribe for a doctor, so she has been keeping track of the meds, tests, results, doctor visits, etc. I just starting working with a homeopathic doctor who uses different tests, food, supplements to help the body heal itself. I was tested for Lyme disease but that was negative. I moved in 2020 after getting divorced. My house is a flip so totally remodeled, but I should look into that more. Good idea! I did have my Epstein-Barr come back super high and read a study that people, especially women, who have EB and Covid have a 60% chance of having long Covid. For now that seems to be what we are going with. I just had my 24 hour urine come back very high (Normethanephrine was 3 times the range and Total Metanephrines was double the range) which can indicate a tumor on my adrenal gland. I see my endocrinologist on Tuesday. SO many specialists and tests! I am thankful I can get into them and I have great insurance.

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Amy | @ajidzior | Jun 30, 2022
In reply to @boltz7555 "@ajidzior Hi Amy - I am so sorry for all that you’re going through. I can’t..." + (show)
@boltz7555

@ajidzior Hi Amy - I am so sorry for all that you’re going through. I can’t offer much help, only virtual support, but I have a couple thoughts/questions.
1. Have you seen a neurologist?
2. Have they considered autonomic dysfunction? Or POTS?
3. Have they tested for Sjögren’s syndrome?
Many autoimmune diseases are very difficult to uncover. If you haven’t seen a neurologist yet, you may consider that. I have some similar symptoms but definitely some differences and after years of being undiagnosed, I finally went to a neurologist and got answers. I have POTS, autonomic dysfunction and small fibers neuropathy (idiopathic). I’ve heard that illnesses such as mono and COVID can cause some of these conditions.
I’m sorry I can’t offer much help but I am here to support as are many others in this forum. Please continue to reach out. You’re doing all the right things by being an advocate for your own health. I hope you find answers soon.
Wishing you well,
Robyn

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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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Amy | @ajidzior | Jun 30, 2022
In reply to @moylandavis "Have you looked into a mast cell activation issue?? This guide can help you rule in..." + (show)
@moylandavis

Have you looked into a mast cell activation issue?? This guide can help you rule in or rule out a mast cell issue. It is written by some of the top doctors in the us on the subject. Once I tested and found a mast cell issues, I began treatment, mostly over the counter meds and supplements, I am much better. I believe my mast cell issues started after 2 very serious infections! Btw, Mayo will not treat mast cell activation syndrome, only to most serious version of mast cell cancers.

https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf

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This is very interesting and I have not heard of it before! I have many of the issues on the test. Can you share with me what over the counter meds and supplements you are using to help? I'm open to all ideas.

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moylandavis | @moylandavis | Jun 30, 2022

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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Amy | @ajidzior | Jun 30, 2022
In reply to @chris47 "Amy - UP Artist is correct about the breadth of damage Covid can cause. Particularly since..." + (show)
@chris47

Amy -
UP Artist is correct about the breadth of damage Covid can cause. Particularly since Covid has been identified as being a cause of Vasculitis - swelling of the bodies vascular system that can damage any organ.
Also the comment about approaching any lingering post infection problems from a multi-faceted point of view. A long covid treatment program is a good start if available in your area.
But, if not there are diagnostic areas that you and your Doctor might want to explore to help give you a medical frame of reference. Basically, it is the old ‘measure to manage’ approach.
There are several tests that can begin to define that framework: CRP test is a gauge of overall inflammation; a B12 test because B vitamins help reduce inflammation and nutrient utilization; Adrenal function test since Cortisol is the body’s primary anti-inflammation mechanism, and a DAO test measures the gut’s ability to create the body’s natural anti-histamine.
This type of testing won’t solve any medical issues you have, but it is a start for defining what and how your body is functioning.
And finally, the comment about resting more and limiting physical stress it very good advice. Pre Covid, you may have been very focused on physical fitness, but your post covid reality is that your body needs to repair itself and the energy that you have used in your fitness activity could be better utilized in getting better first before you return to your fitness efforts.
Chris47 -
PS - I am not an MD. But have been managing my Celiac Disease for the last 30 years and CD symptoms are very similar to many of the symptoms associated with long Covid - particularly since both cause major immune system responses!

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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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