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.

@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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@juanr1520 Thats terrible I hope you can find an explanation and treatment for this evidently you where allergic to the contrast dye for one Is there an antidote for this dye?Milk is an antidote but not sure that will help you .My experience with burning sensations I have in my thighs is I use a cool washcloth and popsicles Im sorry I cant help you this is just my suggestions I know of and do for myself

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@redhead63

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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Replying to @tinkerbell and @redhead63 Don't know where you live Tinkerbell, but I know of an excellent environmental M.D. in the area of Charleston, South Carolina. It's now called Center for Occupational & Environmental Medicine (COEM). Try http://www.coem.com

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@steeldove – Thanks for the information. I live in Orlando, Florida.

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@juanr1520

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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Hi @juanr1520,

According to this recent study, https://www.sciencedirect.com/science/article/pii/S1548559517300575, "Patients presenting with gadolinium deposition disease may show signs and symptoms that somewhat follows a pattern similar but not identical, and also less severe, to those observed in nephrogenic systemic fibrosis."

I'm tagging @ca426 as he has mentioned nephrogenic systemic fibrosis (NSF), and may be able to share some insights with you.
I'm not sure if you're being treated at Mayo Clinic, but here's some information about Mayo Clinic's care approach for NSF: https://www.mayoclinic.org/diseases-conditions/nephrogenic-systemic-fibrosis/care-at-mayo-clinic/mac-20352305

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I have fibro, ms, sjogrens, cfs, lupus, peripheral neuropathy-100 types of neuropathy. I would see a rheumatologist or internal medicine. My rheumatologist said my sjogrens is my primary disease, and sjogrens can cause multiple organ issues. I knew I had lupus, no one would believe me, I had a butterfly rash for months. All my ANA tests were normal. I went online found a test called anti-sm,or anti-smith. Not a common test. But always lupus, I tested positive 3 times 10 yrs ago, but also negative last few yrs. I was told the numbers go up and they go down. Like a lot of medical tests. My lupus is not active at this time.

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@johnbishop

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 I'm new to this site, I'm looking for answers and people I can talk to that has the same problems I do. It's scary alone. I can't talk to my husband because he is permanently in a wheelchair. I have fibromaylia , Addison and just this month after a biopsy on my arm, it has been itching and looking like I had a bad sun burn, they diagnosed with connective tissue disase. I feel like I'm go crazy I itch ALL over my body. I have cream and a pill that I take it helps but it doesn't last long. I'm so fatigue, I do things, for example, I go to town to do groceries and by the time I get back I just collapse and the next day I'm in the bed. It's so hard for me also to push my self everyday cause I have to take care my husband. I do have a nurse 2 hours a day, thank God. But the rest of the day is on me, it's so hard. I'm scare of what this disease is about and symptoms and etc.. can someone help me understand the disease, please, I'm one of those people the more I know the better I can deal with it. I also know my back and the bones in my body hurt every time I get up moving, about 10 mins. the pain is unbearable. I'm in the middle of taking a mailigance panel have 1 more left. Once everything is done I meet back with the dermatologist to see where we go from there. This is my story sorry it was so long.

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@joielivingbyfai

Hello I'm new to this site, I'm looking for answers and people I can talk to that has the same problems I do. It's scary alone. I can't talk to my husband because he is permanently in a wheelchair. I have fibromaylia , Addison and just this month after a biopsy on my arm, it has been itching and looking like I had a bad sun burn, they diagnosed with connective tissue disase. I feel like I'm go crazy I itch ALL over my body. I have cream and a pill that I take it helps but it doesn't last long. I'm so fatigue, I do things, for example, I go to town to do groceries and by the time I get back I just collapse and the next day I'm in the bed. It's so hard for me also to push my self everyday cause I have to take care my husband. I do have a nurse 2 hours a day, thank God. But the rest of the day is on me, it's so hard. I'm scare of what this disease is about and symptoms and etc.. can someone help me understand the disease, please, I'm one of those people the more I know the better I can deal with it. I also know my back and the bones in my body hurt every time I get up moving, about 10 mins. the pain is unbearable. I'm in the middle of taking a mailigance panel have 1 more left. Once everything is done I meet back with the dermatologist to see where we go from there. This is my story sorry it was so long.

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I can certainly relate to all the symptoms from the unbearable pain in the abdomen, all over body itching and joint muscle pain. The most menial tasks might put me in bed for 2-3 days. And I mean not get up to do anything! At Mayo, my endocrinologist told me it was not Addison’s Disease, because I increased in cortisol when stressed during my ACTH test. However, I had no baseline cortisol @

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My itching is only on my arms, since 1988. But if I take an pain meds, then I am allergic and it is this awful feather like itching all over, pain is better. As to abdomen, if I get a bad stomach ache or I am on antibiotics then I take a probiotic. It's amazing how great it works. I am constantly tested all the time, blood work slways. I am the only one in my family with these issues. So strange. I hated to have my right knee done and cataracts, but putting off, just so tired of the doctors. Lately some pretty bad ones. I figure nothing is going to kill me, it will just make life miserable, just my luck I will out live everyone.

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