1. < Autoimmune Diseases

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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seanlroop | @seanlroop | Oct 21, 2018
In reply to @anniemaggie "My itching is only on my arms, since 1988. But if I take an pain meds,..." + (show)
@anniemaggie

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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@anniemaggle - Ironically my local endocrinologist said, "the worst thing that I can tell you is that this is not going to kill you..." Thanks a lot, Doc! So sorry, because I know the misery you are suffering and I am 49. I have quite a haul until I get dirt in my mouth, so I am going to do whatever to actually "live" rather than "exist". Carpe' Diem is tattooed on my stomach. I got it after Mayo cured me of cancer at 25 years old in 1995. I intend on "Seizing The Day"! Remember to get you a little "life" every day while you are here because life is finite and God won't reveal to us our destiny but will guide our journey. God bless you! Sean Roop

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 22, 2018
In reply to @joielivingbyfai "Hello I'm new to this site, I'm looking for answers and people I can talk to..." + (show)
@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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Hello @joielivingbyfai, welcome to Connect. Thank you for sharing your post. It is scary when you are alone. I can assure you that you are not alone and you will get support from members of the Connect community. There is another active discussion where you will be able to meet other members and learn how they are dealing with MCTD (Mixed Connective Tissue Disease). I'm tagging our Moderator @kanaazpereira to see if she can move your post to the discussion.

Groups > Autoimmune Diseases > MCTD (Mixed Connective Tissue Disease)
-- https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

While we are waiting, here some information that will help you learn a more about MCTD:

Mixed Connective Tissue Disease - Symtoms & Causes
-- https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

@joielivingbyfai so you have any specific questions you are trying to get answered?

John

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jonpaulcobaltpo | @jonpaulcobaltpo | Nov 25, 2018
In reply to @edda "I had open brain surgery for an AVL and they put two titanium clips in. Since..." + (show)
@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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I have Autoanune problems & come to find out my 2 titanium hip had cobalt in them & high cobalt levels , 5.0 PPB Can cause autoamune as well as other systemic problems. I recoment a blood cobalt level test

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2 replies
peach414144 | @peach414144 | Nov 25, 2018
In reply to @jonpaulcobaltpo "I have Autoanune problems & come to find out my 2 titanium hip had cobalt in..." + (show)
@jonpaulcobaltpo

I have Autoanune problems & come to find out my 2 titanium hip had cobalt in them & high cobalt levels , 5.0 PPB Can cause autoamune as well as other systemic problems. I recoment a blood cobalt level test

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I had 3 stents put into my iliac veins this september. I wonder could this cause the same results for me? peach

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1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 25, 2018
In reply to @jonpaulcobaltpo "I have Autoanune problems & come to find out my 2 titanium hip had cobalt in..." + (show)
@jonpaulcobaltpo

I have Autoanune problems & come to find out my 2 titanium hip had cobalt in them & high cobalt levels , 5.0 PPB Can cause autoamune as well as other systemic problems. I recoment a blood cobalt level test

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@jonpaulcobaltpo There are treatments for metal sensitivities. The Environmental Health Center in Dallas treats environmental and immune problems and did a lot of the research into this. They sell medical volumes for doctors in their store about treatment protocols, and you can go there for treatment. I haven't been there, but this was information from my doctor who is in the American Academy of Environmental Medicine https://www.aaemonline.org/. The link to the Environmental Health Center in Dallas is https://www.ehcd.com/
I am a Mayo spine surgery patient and I was concerned about immune reactions to implants. I did have metal sensitivity testing for implants done at a lab in Chicago, Orthopedic Analysis https://www.orthopedicanalysis.com/ It's good to think about that before receiving surgical implants. I sent a blood sample by mail that had to stay warm and they provided a heat pack. Although I didn't have reactions to the metals tested, I was able to have spine surgery without hardware because I agreed to stay in a neck brace for 3 months. I have issues with reactions to metals in earrings and had to stop wearing them, so I was concerned. Thanks for bringing this up. It's good information and it should be something patients should ask their doctors.

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lioness | @lioness | Nov 25, 2018
In reply to @peach414144 "I had 3 stents put into my iliac veins this september. I wonder could this cause..." + (show)
@peach414144

I had 3 stents put into my iliac veins this september. I wonder could this cause the same results for me? peach

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@peach414144 Id ask the surgeon that put them what the material is?

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airey2 | @airey2 | Nov 26, 2018

I have possible celiac disease (had everything but the antibodies) and endometriosis. I am being treated as if I do have celiac. My endometriosis doctor said that celiac requires a low fiber diet.
I am already on a gluten free diet, but my GI doctor never told me about celiac requiring low fiber diet too. Does celiac require a low fiber diet?

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3 replies
Kay Rovik | @anniemaggie | Nov 26, 2018
In reply to @airey2 "I have possible celiac disease (had everything but the antibodies) and endometriosis. I am being treated..." + (show)
@airey2

I have possible celiac disease (had everything but the antibodies) and endometriosis. I am being treated as if I do have celiac. My endometriosis doctor said that celiac requires a low fiber diet.
I am already on a gluten free diet, but my GI doctor never told me about celiac requiring low fiber diet too. Does celiac require a low fiber diet?

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I don't know, I do not have it. But you need fiber, so your system moves along

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 26, 2018
In reply to @airey2 "I have possible celiac disease (had everything but the antibodies) and endometriosis. I am being treated..." + (show)
@airey2

I have possible celiac disease (had everything but the antibodies) and endometriosis. I am being treated as if I do have celiac. My endometriosis doctor said that celiac requires a low fiber diet.
I am already on a gluten free diet, but my GI doctor never told me about celiac requiring low fiber diet too. Does celiac require a low fiber diet?

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Hi @airey2 -- There is a good questions and answers article on the Mayo Clinic site that you may be interested in reading.

Mayo Clinic Q and A: Following Gluten-Free Diet for Celiac Disease
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-following-gluten-free-diet-for-celiac-disease/

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 27, 2018
In reply to @airey2 "I have possible celiac disease (had everything but the antibodies) and endometriosis. I am being treated..." + (show)
@airey2

I have possible celiac disease (had everything but the antibodies) and endometriosis. I am being treated as if I do have celiac. My endometriosis doctor said that celiac requires a low fiber diet.
I am already on a gluten free diet, but my GI doctor never told me about celiac requiring low fiber diet too. Does celiac require a low fiber diet?

Jump to this post

@airey2 if your endometriosis doctor is recommending a low fiber diet here's some good information that might be helpful from Mayo Clinic.

Low-fiber diet do's and don'ts
-- https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/low-fiber-diet/art-20048511

John

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