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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@pjshoppes

Does anyone have problems with Oriencia effecting their Menieres Disease. Mine has escalated & lasts for days. Like I’m stuck in a Minieres attack. My RA hasn’t been successfully controlled & I’ve had so many side effects from the many treatments in the last 12 yrs? Help. My ENT & rheumatologist disagree.

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Hello @pjshoppes, welcome to Mayo Clinic Connect. I'm glad you are asking questions and trying to find answers. We each need to advocate for our own health.

Here are some links I found that may be helpful.

rxlist.com — Common side effects of Orencia (dizzyness is one of them)
https://www.rxlist.com/orencia-side-effects-drug-center.htm

eHealthMe — Orencia and Meniere's disease – from FDA reports
https://www.ehealthme.com/ds/orencia/meniere-s-disease/

Mayo Clinic – Meniere's disease – Symptoms & causes
https://www.mayoclinic.org/diseases-conditions/menieres-disease/symptoms-causes/syc-20374910

NIH – Ménière's Disease
https://www.nidcd.nih.gov/health/menieres-disease

@pjshoppes did your ENT & rheumatologist offer any explanations or alternatives that might be causing you to feel like you are stuck in a Minieres attack?

John

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Hello all. Arkansas here and I’m not even sure where to start regarding my health issues, but I strongly believe I have metal poisoning and the doctors here have given up on me. My PCP yesterday said I should go to Mayo, so I’m just now trying to find a place to start

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@pcjohnson

Hello all. Arkansas here and I’m not even sure where to start regarding my health issues, but I strongly believe I have metal poisoning and the doctors here have given up on me. My PCP yesterday said I should go to Mayo, so I’m just now trying to find a place to start

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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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@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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@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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