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 @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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@seanlroop

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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We did the test where they take a baseline blood, where your npo then they take your blood and right after they would get me corsoul shot then you wait some many mins. And 3 times my results was at 1. I understand that disease well somewhat this my endocrinologists , then my arm turn very red and was itching really bad.at my elbow alway up and about 8 inches my arm looked I was severely sunburned, had it for now a year I'd show it to doctors and they would say they just did not know, I took it upon my self to call a dermatologist and they did a biopsy and diagnostic had connective tissue disease, I don't understand anything about it but I'm so tired and itching terribly and can tell my health is declining and I'm scare any suggestions is helpful . More I can find out about the disease the better I will be. Thanks!

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I begged a doctor in 2000 for something for my arms. She prescribed hydroxzine. It is a lifesaver. I was originally given 8 in a day and I took 4 in the morning & 4 at night. Well over the yrs they have cut that back, my doctor says something about Beers Criteria, in the elderly, I really don't care, I can't handle the itching. I am 70, my mind is 30. One dermatologist said we could do light therapy on my arms, but it would make the lupus worse, said o thanks. Lupus is not active. I have also been on lyrica since about 2005 for tingling in my right arm I am trying to get off that, it added 25 lbs.

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@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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@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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@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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@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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@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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@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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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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@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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@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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@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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@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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