Possible Autoimmune…undiagnosed

Hi, I too have stomach problems. Not sure if I am going to get sick if I go some place. Bummer. I went to my primary care today and I told her all about the symptoms I had. She too finished the visit by saying “you are full of anxiety”. Not anything I didn’t know. I started to cry because that really is my problem and has been all my life and I am 77. I am sick and tired. I have been to so many counselors in my life. I need healing. Please help me Lord. Sheila

Prayers for you🌻I too suffered from stomach issues & pushed to have a colonoscopy…I didn’t want one but I knew I needed one. I received my results from that & it’s diverticulitis. I don’t know if that would help to have a colonoscopy but it’s worth a shot. I’m so sorry you’re going through this.

Did your doctor offer you any help for this anxiety or just give you a diagnosis? My GP has been very supportive, encouraging me to get any test that might give me an answer to my pain. I’ve had an endoscopy, colonoscopy, and I’m going for bloodwork this Thursday. It helps me to rule things out rather than worry. I am taking medication for anxiety. I don’t know if that’s something you would be comfortable with, but it certainly has helped me calm down a great deal. Please don’t settle for living with this misery. Look for alternatives because they are out there. We just have to force ourselves to search them out and then do them. I know I need to get out more and do things rather than staying in the house all day. I always feel better when I take a morning walk, but I live in Las Vegas and right now the weather doesn’t really work for that. I attended a church group that meets weekly for three different studies every year, so I look forward to that starting again in September and really praying I’ll be able to attend. Maybe you could see a friend for coffee or tea? Do any of those things sound like something you could do? I’m pretty sure my anxiety causes my stomach problems because when it comes time to fulfill a commitment to things with others, it kicks in and I usually bail at the last minute. I am, however, able to keep all my doctors appointments and find I enjoy chatting with everyone in the offices. I miss seeing people and talking to them, so I am determined to overcome this. If I can talk to strangers in a doctors office, I certainly should be able to talk to people I know! And it reinforces that I am inflicting this anxiety on myself if only certain things cause it to kick in. It’s hard to explain, but maybe you already understand. I will be praying for you, Sheila! I hope things improve soon. Anytime you need an ear, I’ve got two! ❤️🙏🏻🙏🏻

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

Hi, I had an Endoscopy and a colonoscopy and it looks like I have a Hiatal Hernia and possibly Celiac Disease. I will know more when the lab report comes back in a couple weeks. Bless you.

First of all, medical science is not perfect. There are still a vast realm of unknowns.

You can present with medical problems. And sometimes, the doctors absolutely cannot figure out what is going on.

Then, some doctors, faced with that scenario will push for an idea which is really more about them looking good, then any real diagnosis or understanding of the issue.

Oh..."it's migraines." --- even if they don't really have any clue if it is migraines or not. They are just asserting that because, you know....maybe. Now you are the test tube in their experimentation to find out what is going on.

Now, if they have an honest idea that it might be a migraine...that is different. That is fine. But when they push forward that idea without any real understanding of what is going on? Well, that is an absolute breach of morality.

And, doctors are people. Some good, some not so good. Some excellent, some horrible. And a few outright criminals in the mix. Oh, yes...doctors go to prison all the time for engaging with various types of corruption.

I had one. About a year after he "treated" me he lost his license to practice and the judge called him "a clear danger to society."

So...that is that.

Now, when doctors push forward the idea that you have a psychological condition and not a medical one?

Well, that is really when they go completely off the cliff into dangerous and destructive behavior.

Actual psychosomatic illness is EXTREMELY RARE!

Now, you could legitimately have some medical problems from high levels of stress. That is definitely true. But to encounter powerful medical problems? Oh that would have to be super high levels of stress...more like trauma than just stress.

For clarity, I will continue in a second post.

Some M.E. / Chronic Fatigue Information Resources - 11
Links
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General Information for Patients with M.E.
from the M.E. Pedia
https://me-pedia.org/wiki/Primer_for_patients
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to generally inform doctors about M.E.
M.E. Resources for Doctors, Therapists, etc.
M.E. Primer
Full version and 2-page summary
1) Full Primer ---- Here’s the full version, big primer for clinicians. It includes a bibliography.
MYALGIC ENCEPHALOMYELITIS – Adult & Paediatric: International Consensus Primer for Medical Practitioners
https://www.me-international.org/uploads/1/2/7/6/127602984/me_icprimer_20 12.pdf?fbclid=IwAR31EagmS2Zes8xU_mTihby4fICyva_ZuM9_xGH6OTezV 1HWFGmQAuslcsU
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2) Summary of Primer Here’s a 2-page summary for doctors drawn from the ME Primer.
A MEDICAL PRACTITIONERS GUIDE FOR DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS (ME)
https://drive.google.com/file/d/1gbi18Z6k1csGNIID_UAMqrJMuXwbAvyr/vie w?fbclid=IwAR3yte-vcbnvlVF15btHVWiv4k4iVfqme7Wp2vYDvynwdHMpG PRe3azE3nA
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3) Info aimed at healthcare providers:
https://www.meaction.net/learn/healthcare-providers/
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General Websites
1) https://www.meaction.net
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2) https://me-pedia.org
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3) Solve ME/CFS Initiative (Solve M.E.)
https://solvecfs.org/
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Article on Getting Disability - from the M.E. Action Website (article has a cutesy title, but solid information...)
https://www.meaction.net/2017/04/17/the-sleepy-girl-guide-to-social-security-d isability-u-s/
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from the ME Action website:
Doctor Finder...
https://www.meaction.net/resources/find-your-doctor/
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M.E. - - - - - Support and Crisis Resources...
https://www.meaction.net/2018/12/20/need-help-support-and-crisis-resources/ ?fbclid=IwAR2vgq4TAGTdupkHuBwyd2hUL9K-SoYNnJDLrjc79Uw7il6pN5 lxlvce1nY
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Primer for family, friends and care providers
https://me-pedia.org/wiki/Primer_for_family,_friends_and_care_providers +++++++++++++++++++++++++++++++

My update…went to see my Primary this week. Before I went to see him I wrote down all the symptoms I’m having and my concerns. I wrote down certain labs that worried me. I had all my ducks in a row.
Went in there and it started off good. I started updating him on what the specialist were suggesting and that the RA Dr had put me on hydroxychloroquine (Plaquenil) to see if that would help me. I had been on it for almost 3 months with no help. I had gained weight extremely fast and am severely bloated after eating to the point that I don’t eat but one meal a day because I stay so bloated that I feel miserable and full. Plus it made my hair loss worse. Needless to say I stopped taking it a few days ago.
Anyway my primary doctor cut me off (so I never finished talking) told me that he thought it was all nerve damage from chemo and radiation (2014). From that point on any time I tried to bring up a concern it was the same answer. While some stuff could be from that not all is. But anyway I told him about my referral to UNC for 2nd opinion (which they still have not called) his response was my FIL went to the Mayo Clinic in Minnesota and then proceeded for 30mins tell me about that experience. While it all sounded great I’m in N.C. and don’t want to travel that far (he offered to refer me there) said only Minnesota because it’s the best.
So another Copay with no success!!
I’ve noticed that many on here have posted that their Dr’s are treating them for Anxiety. I too have been on Anxiety meds for 15 or so yrs. Wellbutrin and at night Ativan to sleep. I’ve recently started weening myself off the Ativan from 4mg a night to 2mg. I’m tired of medications and I’m scared about how long before 4mg isn’t enough. So far I’m only sleeping half the amount but when I wake up I start praying and it puts me back to sleep. With 4mg I slept through the night but with no meds I stayed awake all night thinking… thank you for venting this long Lol

I tried to post something, didn't take, maybe too long, I will try to break it up into two:

So, I am going to take your text, then respond within it…a little easier for my brain to process it that way.

So, first of all, very very sorry for your difficulties.

Second, I have been in support groups with many people who had difficult illnesses to diagnose, invisible illness and on.

The good news is, that if you research hard, work hard and keep trying…the odds are extremely strong that you will get symptom reduction and more towards recovery. I know many people who have been very close to death (including me), who have regained a great deal of health.

You wrote:

So I have been seeing a new dr & after only 2 appointments, he say it’s depression/anxiety.

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If you have actual physical medical symptoms, odds that it is (just) depression are very very low.

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In December 2021, I ended up with a virus. Went to the ER & both Covid & Flu test were negative.

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Ok, just because they didn’t find a definitive cause, doesn’t mean there wasn’t one. Say you got a more unusual virus. And say some factory in your area had a release of some unusual chemical. This much you can say…as far as the combination of those two things? Odds are extremely strong that medical science never did a single study on the effects of those two things together. Medical science does many wonderful things, but the field is so incredibly vast, they just can’t cover everything.

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In June/July of 2022 I noticed I was more fatigued & having more headaches than usual. I put it off as working a lot.

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Ok, but it may have been more than just exhaustion from work. The more symptoms you have, the less likely it is that you do not have something definitively medical going on…

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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.

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Something was going on. Does not matter if tests were normal. General public tends not to realize that testing is not massively comprehensive. It is general. They do general tests to rule out major issues. The reason that they don’t do more extensive testing when they don’t find a cause is, well, number one…cost. Number two…even if they are completely honest in intention, sometimes they can’t easily nail down what kind of tests will yield fruitful results.

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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.

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Well, that certainly does not sound like a scrupulous medical investigation. And if you have complex problems, anything less than a dedicated, scrupulous investigation is not going to yield much.

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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.

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There are a wide range of issues. The odds that this is just stress or migraines or headaches or depression??? The odds of that is basically zero. Too many things going on to be easily ascribed to something like that.

Generally, if you encounter weakness and difficulty doing tasks…do not push through. Generally, the idea would be to rest, take it easy, until diagnosis reveals what is going on.

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I went to 2 neurologists both of who didn’t run tests & again said migraines.

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Didn’t run tests? That sounds like very irresponsible “care.”

I have issues about interacting with doctors. It comes from my background. I was a violent crime victim. I have PTSD and other issues. I never used to mention it. But then I got treated poorly. So I had to tell them why my demeanor was what it was.

Sometimes folks have a certain tone in their voice, or some other basic kind of demeanor and the docs will run to thinking you are a hypochondriac, then ignore every bit of info you give them and just push it all off as some kind of irresponsible patient.

One way to defeat that is tests. So, they said some things like that to me. But I got an EKG which showed skipped heartbeats. After they saw the documentation of the results, they stopped presuming I was making stuff up.

So, unfortunately, you may have encountered something like that.

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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.

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I have to say it sounds like they are “knocking out” some “quick guess work,” rather than taking a real deep dive into what is going on.

There are some advanced clinics that do better work. Often, their work falls outside of insurance. You know, they are just inundated with patients like you, like me, who need more detailed care.

I wish I knew how to find one of these kinds of doctors, easily for you. I haven’t been able to do it for myself either.

I know the names of a few clinics you might try:

Clymer Clinic in Pennsylvania
Hippocrates Clinic in Florida
Environmental Health Center in Dallas
https://www.ehcd.com/
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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.

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Really really sounds someone who needs to be described with a four letter word. Bulging disks in neck and he says it is no problem? Oh, he means for himself, I guess. Bad discs in the neck can be a more minor problem, but can be much worse. Lots of folks with chronic health problems, tend to have neck problems. Very common.

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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”.

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Very irresponsible answer.

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His suggestion is I have depression/anxiety which I’ve never had before all because he woke up one day with depression/anxiety.

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Find a better doctor, I would stay away from that creature.

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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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Posted links for you re M.E.

You clearly need someone to take a much deeper dive into your health problems.

In the meantime, rule out environmental factors: mold, radon, near a powerful pollution source.

Best to stay away from chemicals. Switch to scent free detergent, cleaners, soaps, etc. etc. etc. In case there is some kind of powerful allergy going on.

Check for food allergies.

Make sure you stay up on optimal hydration. Get top quality nutrition. Don’t skip on any of the basics…make sure you are getting enough water, protein, fresh and healthy food. Make sure you are getting a lot of sleep. With health problems, you really want to get in there and get 8 full hours, every day.

For environmental illness:

The American Academy of Enviromental Medicine
https://www.aaemonline.org/
Generally, they are cutting edge doctors, so interacting with them may give you some leads, even if you don’t have environmental illness.

Lastly, best to review all the major chronic illnesses in case you are getting: MS, Lupus, Lyme, Fibro, etc. etc. etc.

In an investigation, you want to rule out all possibilities.

Wish I could help more.

Best of luck..