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.

@johnbishop

Hello @pcjohnson, welcome to Mayo Connect. I'm glad you are being an advocate for your health and search for answers. I'm sorry to hear your doctors are not able to diagnose your health issues. I would ask my PCP if they will give you a referral to Mayo Clinic to help you get an appointment. Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information:
https://www.mayoclinic.org/appointments

@pcjohnson can you share why you believe you have metal poisoning?

John

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Thanks for asking John. I have metal in my face and hip and since a wreck in 2009, I've had issues, but return visits to Orthopedic docs have yielded no help with the pain and joint weakness. My immune system has gone rogue and many issues addressed separately, but in August, I demanded a test after my multiple skin rashes that come on suddenly and also contort my face with swelling. Haven't had to use the epipen yet, but I feel that will be the next phase.

I had a patch test that resulted in Cobalt reaction. I got medical records from maxillofacial and ortho surgeon, but neither of them state what the metal was, but assume titanium. After gaining the patch test results, I have been researching metal poisoning and I have several of the symptoms. Gastric disturbances – hospitalized last year for this, thyroid – my hair fell out, sleep disturbances – had sleep study and no apnea noted, neurological tingling/burning in my extremities (tests done by neurologist said I have complex regional pain syndrome), memory issues (tested for alzheimers), hearing loss.

My PCP has referred me to Mayo because I am too complicated. I believe all these symptoms would go away or reduce when I can get this metal out of my body.

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@tinkerbell

@pcjohnson – from Tinkerbell – My neighbor had cobalt poisining from a hip replacement. She was diagnosed at Mayo and both hip joints have been replaced. My neighbor and I both go to Mayo. It is a wonderful facility. We go to the Clinic in Jacksonville. They do have hotels nearby that give you a discount if you are a patient at Mayo.

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Jacksonville would probably be closer to me, but wondering if I would have the same level of care as the Rochester location. I just am learning about treatment. I do have another ortho doc appt late next month and am armed with the patch test cobalt-positive result.

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In my humble opinion, I think you go to Rochester. I live in FL, and I chose to go to the REAL MAYO! There is a reason they are ranked #1 in the world. Unless you are going for Neurology, I suggest hopping your happy butt on a plane. It is literally a reality check when you go to Rochester. This place is beyond anything you can imagine when you talk about healthcare. Again – GOD BLESS MAYO and the people that support their God-driven values and mission to heal us. I cannot say enough good things about this place, which basically is all of Rochester! Good luck to all that come, and put your faith in the fact that you are where you need to be when things go sideways with your health. Amazing is the only word that needs be used in the same sentence with THE MAYO CLINIC – Rochester! Why even chance it to go to the subsidiary unless it is for their Neurology, which I believe Jacksonville ranks better in general for this area of study. God bless you all – Sean Roop!

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@pcjohnson

Jacksonville would probably be closer to me, but wondering if I would have the same level of care as the Rochester location. I just am learning about treatment. I do have another ortho doc appt late next month and am armed with the patch test cobalt-positive result.

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@pcjohnson – I will check with my Neighbor to see what department took care of her here in Jacksonville. Tinkerbell

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@pcjohnson

Jacksonville would probably be closer to me, but wondering if I would have the same level of care as the Rochester location. I just am learning about treatment. I do have another ortho doc appt late next month and am armed with the patch test cobalt-positive result.

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@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

Thanks for asking John. I have metal in my face and hip and since a wreck in 2009, I've had issues, but return visits to Orthopedic docs have yielded no help with the pain and joint weakness. My immune system has gone rogue and many issues addressed separately, but in August, I demanded a test after my multiple skin rashes that come on suddenly and also contort my face with swelling. Haven't had to use the epipen yet, but I feel that will be the next phase.

I had a patch test that resulted in Cobalt reaction. I got medical records from maxillofacial and ortho surgeon, but neither of them state what the metal was, but assume titanium. After gaining the patch test results, I have been researching metal poisoning and I have several of the symptoms. Gastric disturbances – hospitalized last year for this, thyroid – my hair fell out, sleep disturbances – had sleep study and no apnea noted, neurological tingling/burning in my extremities (tests done by neurologist said I have complex regional pain syndrome), memory issues (tested for alzheimers), hearing loss.

My PCP has referred me to Mayo because I am too complicated. I believe all these symptoms would go away or reduce when I can get this metal out of my body.

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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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@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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