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DiscussionUndiagnosed Autoimmune Disease - No one will listen to me
Autoimmune Diseases | Last Active: Jan 24 3:56pm | Replies (173)Comment receiving replies
Replies to "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..."
Pain controls my life thanks to EDS and doctors knowing nothing and no time or interest to study it. Computers should do better too. I have searched many hours and am amazed that there is so much misinformation and that EDS especially hEDS IS USED FOR A CATCH-all of “I have no idea”.
Hi,
Has anyone mentioned psoriatic arthritis as a possible diagnosis for you? Your symptoms are similar to mine. At age 68 when a bug bite turned into psoriasis, I recognized it since my dad had it and my brother and son have it. My son also has PsA, affecting his feet, back and sternum. It’s not too uncommon for PsA to be present without the appearance of psoriasis, and looking back, I think I had it before the skin issues appeared.
PsA is unpredictable; it comes and goes, affecting tendons, ligaments and joints in a random manner. And fatigue can be a major issue, too.
Initially, and out of the blue, I had experienced ankle pain which moved down into the sole of my foot and I couldn’t walk on it. Would you believe, a nurse practitioner diagnosed “circulation problems” by looking at my normally thick ankles. No ex-rays taken, just prescribed lasix, and told to wear sturdy shoes. My other son who’s an RN advised me not to take the lasix since I had no pitting edema or other signs of fluid retention. After a couple of weeks the pain was gone, which is typical of PsA flares. When I later experienced different foot pain (after developing the pso)and saw a podiatrist, he diagnosed Morton’s neuroma and PsA, and shortly thereafter I developed dactylitis (sausage toes—one on each foot), another symptom of PsA.
But it was after 3 bouts of debilitating hip pain that I went to my son’s rheumatologist who also diagnosed PsA and ankylosing spondylitis, which affects my SI joints. A lot of my pain has come from enthesitis which is inflammation of the tendons and ligaments. Swelling of the joints, not so much. I’m on a biologic which has given me clear skin and saved me from flares. I still deal with morning stiffness, fatigue and lack of stamina. My son does well on methotrexate.
Unlike OA which is helped by rest, PsA gets better with activity. I’ve found this to be true; after sitting or reclining for any length of time, standing and taking the first steps are difficult, but if I keep moving it gets better. The only problem is I tire so easily. Walking any distance feels like I’m wading through water with lead weights around my hips; it’s exhausting. How I miss the days when I could walk for miles effortlessly!
Wishing you success in soon finding answers!
Hi!
The article at link below titled, “Could you be Misdiagnosed with RA? 9 Conditions That Mimic Rheumatoid Arthritis” reviews
- rheumatoid arthritis
- Osteoarthritis
- Gout
- Psoriatic Arthritis
- Parvovirus
- Chikungunya
- Lyme Disease
- Reactive Arthritis
- Fibromyalgia
- Lupus
The article compares similarities and different between the above conditions and RA w/ the goal of helping someone get the right diagnosis and treatment needed.
Hoping this information is of help to you!
https://www.healthcentral.com/slideshow/conditions-that-mimic-rheumatoid-arthritis
It seems you should be evaluated for long Covid. There is evidence that both long Covid and the Covid vaccines can cause immune dysregulation. Can you apply to be evaluated at a long Covid Clinic? Are you following the Long Covid discussion on Mayo Connect? The following study discusses how long Covid can mimic rheumatic disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8629735/
In our world, where every little bit of our bodies, minds and relationships is open to scrutiny, there is no reason a person can not at least find a few clues to what is happening to them. But this does come across the transom far too often. When this comes, I believe the place to start is with the whole process of Genomics, the hints of being what we are. If I want to use insurance of any kind, I have to use the Samaritan system, and there I am certain to be ripped off, then ignored. But if I can spend my own money, and not rely on insurance, There is a way. There are firms who will investigate your genetics, and tell you (for a fee, of course--a few hundred $) what your body is messing with. Sequencing.com, Nebula Genomics, and dozens more, will spit out millions of details to help you find your answers. And you will pay for interpretation. But the largest problem is to challenge the ego of your MD, DO, Dentist PA or whatever. Anyway, I suggest you get into the world of genetics/genomics. I have about 400 genetic issues which are listed by NIH and others as Pathogenic or Likely Pathogenic. I am probably close to death, but I even got a letter a few days ago, making the arrangements for a consultation with a group to work on my issues. However, there was one issue. That group did not give me a name, an address, anything which would tell me who they are. The other issue is cost. I consulted with a group within the Samaritan system. The doctor told me the whole process would be covered entirely. They took the samples, and had them analyzed. THEN the MD gave me a personal bill for $4,000. I suggested another place to put his wasted ego. oldkarl
Just read your post wow are we 2 peas in a pod and how I feel with you test after test and the famous "your fine there is nothing wrong with you " if you need to talk. I offer you bc I have recently been loosing my eye site I can talk n text it seems like we have a lot in common 😉
Have you checked your symptoms with those of Polymyalgia Rheumatica? Mine began after my Covid vaccine.
Here is a link to the Beta Alanine that I take:
https://www.amazon.com/NOW-Sports-Beta-Alanine-750mg-Capsules/dp/B001AWSR34
You can also buy it in powder form that mixes with water but I prefer the capsules...
Good Luck, it is worth a try for only $17...I hope it works for you!!
Lexprobiotic — Keep trying to get a diagnosis; don’t get discouraged. Get a new doctor.
@anniebrook - My experience is probably totally different from yours, but I gave birth to my second child in April 1983. Turns out I damaged my right shoulder pushing the baby out! It’s still a problem.
About the same time I was diagnosed with 2 disintegrated cervical discs that causes right arm weakness.
I hope your upcoming MRI will give you some answers that will lead to pain relief.
My daughter lives in Sweden with a similar health system as Canada. She has spent years trying to get help for chronic pain and exhaustion- so far nothing.