Financial strain of having multiple autoimmune diseases

Posted by mary1121 @mary1121, Aug 10, 2018

I have just been diagnosed with my 6th autoimmune disease. I am in a panic state. MS, Celiac,hypothyroidism, fibromyalgia and lupus. I want to get in with a functional doctor, but all of the ones that I have talked to cost between $10,000-15,000 upfront. I don’t know where to turn.

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@tinkerbell

@pcjohnson – Tinkerbell again. I have sent a text to my neighbor. She had lots of problems – skin rashes, stomach issues an the list goes on. I will get back to you once I get her reply.

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@pcjohnson – From Tinkerbell – I just talked to my neighbor. I cannot tell you which clinic is better to go to but these are some of her symptoms. Joint pain, rash, stomach pain, headaches, burning in legs and arms, total body hives. This went on for 5 years after first hip was done. She was seen in the Dermatology Department and the Allergy Department is located right next to it. She said it took her 2 weeks to get all of the testing. You have to wait 1 day between each day of testing so they can read the results off of your back. A Dr. Hall in Dermatology did the testing. She is starting to feel good and this is a few months since the surgery to replace the hip joint. Her allergy is to the cobalt. Metal testing is a specific type of testing. She would be happy to talk to you on the phone and we would have to see how this would be accomplished.

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@edda

I had open brain surgery for an AVL and they put two titanium clips in. Since then, I had problems with the digestive tract, pain in the cervical spine, headaches, chronic pain. All the tests they did came back positive. Now my pain management doctor thinks it might be my own immune system, that is attacking my body. Has anybody had experience with that?

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All my symptoms are autoimmune with my body attacking itself. Last week, my gastro doc suggested mastocytosis. Egad, it just gets “worser and worser.”

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@tinkerbell

@pcjohnson – From Tinkerbell – I just talked to my neighbor. I cannot tell you which clinic is better to go to but these are some of her symptoms. Joint pain, rash, stomach pain, headaches, burning in legs and arms, total body hives. This went on for 5 years after first hip was done. She was seen in the Dermatology Department and the Allergy Department is located right next to it. She said it took her 2 weeks to get all of the testing. You have to wait 1 day between each day of testing so they can read the results off of your back. A Dr. Hall in Dermatology did the testing. She is starting to feel good and this is a few months since the surgery to replace the hip joint. Her allergy is to the cobalt. Metal testing is a specific type of testing. She would be happy to talk to you on the phone and we would have to see how this would be accomplished.

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Good info! Been feeling like a freak and everyone is sick of my complaints. it is reassuring to hear I’m not the only one—even though docs seem to only want to treat symptoms and not address the root cause.

Did your neighbor actually have the appliance removed at the Mayo Clinic or did they do all the testing then told her what to do and she went back home to have the surgery? Had she already had the allergy testing done prior and knew she had the cobalt allergy? I am just wondering if it has to be done again adding more time to the stay. I really am new to all this.

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@pcjohnson

All my symptoms are autoimmune with my body attacking itself. Last week, my gastro doc suggested mastocytosis. Egad, it just gets “worser and worser.”

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When you say all tests came back positive, what do you mean? Metal allergy positive? This is meant for@edda

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@pcjohnson – from Tinkerbell – She originally had her hips done at Mayo. The first done was a planned surgery and the second was done after a fall. It took awhile for them to find out she had cobalt poisoning. She was sick and they could not figure out what was causing her problems. The surgeries were all done at Mayo. Unfortunately, the second surgery was done before they knew she had cobalt poisoning. She was told titanium poisoning is rare. If she had titanium poisoning, they would have had to remove the rod that goes down into the thigh. The had to remove the ball joint only. Still a bad surgery to have two times. We live in Orlando so we only 2 1/2 hours each way.

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Hi:
Find youta good Rheumatologist

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@tinkerbell

@pcjohnson – from Tinkerbell – She originally had her hips done at Mayo. The first done was a planned surgery and the second was done after a fall. It took awhile for them to find out she had cobalt poisoning. She was sick and they could not figure out what was causing her problems. The surgeries were all done at Mayo. Unfortunately, the second surgery was done before they knew she had cobalt poisoning. She was told titanium poisoning is rare. If she had titanium poisoning, they would have had to remove the rod that goes down into the thigh. The had to remove the ball joint only. Still a bad surgery to have two times. We live in Orlando so we only 2 1/2 hours each way.

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Read the whole article I would definitely find an Environmental Doctor or a Dr. that specializes in Autism because they check for Chemicals in your body and they also know what drugs to use to remove the poisons. I used DSMA when I had a lot of chemicals (poisonings) in my body or find a holistic doctor that has a medical degree so that way your insurance will pay for it. Do your research. Why pay $10,000 when there are Doctors out there that can help.

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@tinkerbell

@pcjohnson – from Tinkerbell – She originally had her hips done at Mayo. The first done was a planned surgery and the second was done after a fall. It took awhile for them to find out she had cobalt poisoning. She was sick and they could not figure out what was causing her problems. The surgeries were all done at Mayo. Unfortunately, the second surgery was done before they knew she had cobalt poisoning. She was told titanium poisoning is rare. If she had titanium poisoning, they would have had to remove the rod that goes down into the thigh. The had to remove the ball joint only. Still a bad surgery to have two times. We live in Orlando so we only 2 1/2 hours each way.

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If you need further hip surgery there are Doctors that just do hips. Dr. Byrd I believe he is in Tennessee and call the Hinsdale Orthopedic in Illinois there is a top notch Orthopaedic Surgeon there you may have to travel but it would be worth it.

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I've been diagnosed with Gadolinium retention (Lab tests done at Mayo Clinic urine/blood April & 24 hour urine May 2018) Only MRI with contrast performed March 05 2018.. 2 hours after having contrast dye injected into my body I felt this intense burning sensation throughout my body my eyes felt like burning also but they also have been extremely sensitive to light. I started having excruciating headaches, joints, muscles, deep bone pain.. Patches of hair were missing, and my scalp, face, arms and mouth were covered with blister like lesions (opens wound). It's been 7 months now and my symptoms keep getting worse, more frequent and more intense.. According to Mayo Clinic the levels of Gadolinium aren't high enough..
It's confusing and stressful when seeking medical attention I've seen at least 5 different physicians regarding my symptoms including a dermatologist who did a skin biopsy Mid September 2018 (lab test positive for prominent dermal fibrosis ) test done by LabCorp who doesn't test for Gadolinium or Nephrogenic Systemic Fibrosis. Dermatologist or physicians I've seen have no clue and have absolutely no clue what gadolinium or nephrogenic systemic fibrosis is. Regarding eventhough tests came back positive for gadolinium and nephrogenic systemic fibrosis they were unable to explain tests results. They have no clue in how to treat this conditions. I've been prescribed all types of medication/creams for allergies with absolutely no help.. One of the rarest side effects for gadolinium retention or nephrogenic systemic fibrosis is lesions or open wounds in the head, face, scalp and mouth and that was probably one of the first side effects I suffered from..
I need advise on how to deal with this unbearable condition.. If anyone out there have knowledge regarding this condition please guide me to the proper medical professionals. I've been at least 5 times to ER for the severity of the pain.. End of April 2018 I thought about taking my own life, that's how bad this medical condition has affected my medical and mental state.. PLEASE HELP..

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Hello @juanr1520, welcome to Connect. I know it's frustrating trying to get help when it seems it's nowhere to be found. Please don't give up. Someone has the answer. I did a search and found some information on Gadolinium Retention that may offer some insight.

Gadolinium Retention After Contrast-Enhanced MRI
https://jamanetwork.com/journals/jama/fullarticle/2702593

Gadolinium Retention: A Research Roadmap from the 2018 NIH/ACR/RSNA Workshop on Gadolinium Chelates
https://pubs.rsna.org/doi/full/10.1148/radiol.2018181151

I'm tagging our Moderator Kanaaz @kanaazpereira to see if she might have some suggestions.

@juanr1520 are you currently being treated at the Mayo Clinic? I see that you mentioned your lab tests were done at Mayo Clinic.

John

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