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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happilyalive | @happilyalive | Jul 17 8:36pm

Unfortunately, it does sometimes take years to get the right diagnosis of what is going on with our bodies. Please hang in there as you know your body better than anyone else. I am curious also--a couple of months ago I couldn't get out of bed one morning due to horrible upper thigh pain that radiated to my hip. It was about a level twelve on a scale of one to ten. I stayed that way all day and couldn't stop crying and shaking from the pain. Long story short, I ended up in one hospital that sent me to another because they couldn't figure it out. The first thing was no pain meds cut through the pain for the first two days. It also affected my left foot by causing severe tingling, pain and swelling on one side. After doses of antibiotics and strong steroids, it finally abated. I did learn that I had high uric acid levels, extremely bad lack of Vitamin D (my level was 9) and several vitamins that had become very far below the level of what was needed. So, maybe have your doctors look into a very detailed metabolic panel and blood work. Low vitamin D does cause bad muscle pain. Keep up the great work at getting yourself some help and let us know how it goes.

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ladydoz | @ladydoz | Jul 18 7:54am
In reply to @lilbit123 "My update…went to see my Primary this week. Before I went to see him I wrote..." + (show)
@lilbit123

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

Jump to this post

I have gone to the Mayo Clinic in Rochester. They are very organized and very thorough. You might want to consider it. I agree with a previous comment. There is only so much medicine can do. I have gone twice now for two different issues and all my blood work is good. I also do have anxiety. If your blood work is good, then I don’t think there is much more they will do for you. Best wishes to your journey.

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zenalucy | @zenalucy | Jul 18 9:00am
In reply to @samcal9977zz "First of all, medical science is not perfect. There are still a vast realm of unknowns...." + (show)
@samcal9977zz

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.

Jump to this post

Who does not live with stress in varying degrees, like up and down ?

REPLY
mimsymode | @mimsymode | Jul 18 11:40am
In reply to @samcal9977zz "First of all, medical science is not perfect. There are still a vast realm of unknowns...." + (show)
@samcal9977zz

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.

Jump to this post

Please send me a private message.

I have a question about the doc who lost his license

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1 reply
samcal9977zz | @samcal9977zz | Jul 18 12:06pm
In reply to @mimsymode "Please send me a private message. I have a question about the doc who lost his..." + (show)
@mimsymode

Please send me a private message.

I have a question about the doc who lost his license

Jump to this post

He lost his license in 1983, so nothing from that era applies to today.

I was permanently disabled because of that man.

I am sorry, but I do not want to discuss him.

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ginger3344 | @ginger3344 | Jul 18 12:45pm

malisawolf did all of this start a few weeks after your covid vaccine?
Mine did and they now admit it may be the cause.

REPLY
1 reply
mimsymode | @mimsymode | Jul 18 12:58pm

I hope you were properly compensated, I’m possibly permanently disabled in my right arm after a mishap with a negligent nurse.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 18 10:27pm

@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!!

REPLY
4 replies
zenalucy | @zenalucy | Jul 18 10:42pm
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 for sharing all this information. I’ll look into it tomorrow

REPLY
melissawolfe1981 | @melissawolfe1981 | Jul 19 8:52am
In reply to @ginger3344 "malisawolf did all of this start a few weeks after your covid vaccine? Mine did and..." + (show)
@ginger3344

malisawolf did all of this start a few weeks after your covid vaccine?
Mine did and they now admit it may be the cause.

Jump to this post

No…I never had the vaccine.

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